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tenacious_one
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14 year old daughter. . .
« on: Jun 9th, 2005, 4:01pm »
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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
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Re: 14 year old daughter. . .
« Reply #1 on: Jun 9th, 2005, 4:17pm »
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Hi Tenacious_One - so sorry that you've got a child in pain.  That just breaks my heart.Sad
 
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.
 
http://www.clusterheadaches.org/resources/kids.htm
 
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.
 
« Last Edit: Jun 9th, 2005, 4:19pm by Margi » IP Logged

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Re: 14 year old daughter. . .
« Reply #2 on: Jun 9th, 2005, 4:18pm »
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Hello..
Oh this is tough. Its so hard being the mother of a kid with CH. Its hard to be the mother of ANY child in pain I know and you have my sympathy.
My 3 year old son has just been diagnosed with cluster headaches and its not an easy ride.
Narcotics for a 14 yr old is something I would be truly unhappy about too. I would urge you to go back and ask for O2. Its a brilliant abortive, I love it (I have ch too) and it works just about every time for me. I would irge you to read up about other abortives and preventatives here and also on this site
http://www.med-owl.com/clusterheadaches/tiki-index.php?page=HomePage& ;PHPSESSID=09b47a92fe34e5e0833260c0a4958d41
It was written by a clusterhead, one of our own, Floridian who is a regular poster on this site and a lovely lovely guy.
I'm not going to advise you about any other meds as  I'm not a doctor, I wouldn't advise anyone only tell them what I was taking, but in your case with a child.. I don't know if any of these meds are suitable or not which is why I'd like you to read up about them so you can be more informed when it comes to your doctors appointment.
We are all here for you anytime you need us. Either here or via instant messaging (see top of page)
PLease please please let us know how you get on and tell us your daughters name!
Don't leave us in suspense, I for one will be anxiously waiting to hear from you to see how you get on. Give your daughters my love. Its horrible kids have to go through this or migraines or any damn pain and it tears me up inside.
A lot of love from me to you too 'cos I know just how much you are hurting too.
Take care, remember - anytime you need us.. okay?!
lots of love and a huge hug
Helen
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Re: 14 year old daughter. . .
« Reply #3 on: Jun 9th, 2005, 4:28pm »
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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    
     
     
http://www.brightok.net/~mnjday/chtherapy.pdf  
 
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.  
 
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm  
     
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!
 
http://www.clusterheadaches.org/Cluster%20Headache%20Syndrome.doc
 
Best wishes, good luck to both of you & stay as positive as you can!!!!  
 
Eric
 
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Re: 14 year old daughter. . .
« Reply #4 on: Jun 10th, 2005, 9:11am »
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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.
 
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Re: 14 year old daughter. . .
« Reply #5 on: Jun 10th, 2005, 3:26pm »
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Smiley 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
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Re: 14 year old daughter. . .
« Reply #6 on: Jun 10th, 2005, 4:06pm »
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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 Smiley
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Re: 14 year old daughter. . .
« Reply #7 on: Jun 10th, 2005, 4:32pm »
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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
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Re: 14 year old daughter. . .
« Reply #8 on: Jun 17th, 2005, 10:45pm »
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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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Re: 14 year old daughter. . .
« Reply #9 on: Jun 18th, 2005, 4:42am »
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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!
 
http://www.clusterheadaches.org/resources/kids.htm
« Last Edit: Jun 18th, 2005, 4:43am by LeLimey » IP Logged





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Re: 14 year old daughter. . .
« Reply #10 on: Jul 12th, 2005, 11:25pm »
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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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Re: 14 year old daughter. . .
« Reply #11 on: Aug 1st, 2005, 2:45am »
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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
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Re: 14 year old daughter. . .
« Reply #12 on: Aug 1st, 2005, 6:13am »
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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
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Re: 14 year old daughter. . .
« Reply #13 on: Aug 1st, 2005, 1:29pm »
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on Aug 1st, 2005, 6:13am, LeLimey wrote:
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

I'm the another member from Finland. Check your instant messages, Elina! Smiley
 
If I can help in any way, let me know.  
 
Best wishes,
Sanna Smiley
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Re: 14 year old daughter. . .
« Reply #14 on: Nov 15th, 2005, 4:44pm »
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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  hug
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Re: 14 year old daughter. . .
« Reply #15 on: Nov 15th, 2005, 7:35pm »
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Ruth you are a strong woman, and a damn fine supporter.
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Re: 14 year old daughter. . .
« Reply #16 on: Apr 1st, 2006, 12:04pm »
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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.
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Re: 14 year old daughter. . .
« Reply #17 on: Feb 1st, 2008, 1:14am »
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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.
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Re: 14 year old daughter. . .
« Reply #18 on: Feb 1st, 2008, 1:24am »
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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.
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Re: 14 year old daughter. . .
« Reply #19 on: Feb 1st, 2008, 2:05am »
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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.
 
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Re: 14 year old daughter. . .
« Reply #20 on: Feb 3rd, 2008, 9:45pm »
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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
« Last Edit: Feb 3rd, 2008, 9:48pm by outofcommission » IP Logged

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Re: 14 year old daughter. . .
« Reply #21 on: Apr 25th, 2008, 11:00pm »
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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
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