Aa
only @ night
Our 12 yr. daughter has had headaches off & on for several years, however this summer the headaches are daily&debilitaing. We went thru the MRI, catscan, lab work everything comes out good. She got glasses & goes to a a Chiropractor. Nothing is working. The part that throws us all off is that her headaches are sometimes all day, but for the most part only @ night. About supper time she starts complaining and heads to bed with meds & a ice pack. Once she is asleep she is good, but has trouble falling asleep. Waking in the morning with a new outlook on life and then right back to feeling awful by supper time again. I am reading that lots of people with Chiari malformation have headaches in the back of the neck, her's are in her forhead. Wondering if anyone has any suggestions, thoughts or info????
Thanks for sharing... :) I DO appreciate ANY imput, advice or just plain support. Our daughter had 5 days w/o headaches and we all were getting excited that just MAYBE she was growing out of them. BUT NO, She ended up with a really bad night and then had to come home from school yesterday. I am waiting to hear from a Ped. Neuro. @ the Mayo in Minnesota who specializes in Chiari Malformation. I will keep everyone posted as to what we find out @ the Mayo. Thank you SO much for all the support!!!!! Praying for a headache free kid!!
Hi! Many good comments/advice above. I just wanted to add my experience with headache location. Several years ago I started to have horrible debilitating pain in my eyebrows. You could even feel lumps there that were excuciating! Was sent to dr after dr. Finally sent to a neurologist and a ent dr. had a catscan done to see if had sinus blockage and found that I have no sinuses in 1 so that wasnt it. Then xray which neurologist read & said that my neck is perfectly straight instead of curved like supposed to be is cause which made no sense to me that that would cause eyebrow pain. He sent me to PT for 2xs a week for 6 weeks. It didn't help me at all. I started chiripractic-couldn't put the curve back but it did stop the pain. Had gotten down to maintenance care and got hurt at work which brought back the eyebrow pain & pain in the back of my head which was when I was told possible chiari further testing recommended. WC Insurance wouldn't pay for further testing saying accident couldn't have caused chiari. 9 months later I got rearended-the pain in back of my head so bad I couldn't even go to work. Further testing finally done & "i do have chiari. Don't know if this story would help you in any way-but i think is related from the forehead pain. At very least shows I had to see many different drs, tests, etc to get answers and still don't know if its my neck shape, chiari or what is the cause of my eyebrow pain. Hope you figure it out and she gets relief!!!
Hi,
A couple of comments to add:
I am so sorry that your daughter, and her parents, are having to go through this. It is so hard to see your child suffer.
I would ask the neurologist to read the MRI again and specifically look for any degree of herniation. As Selma said, some radiologists don't look for it or think it important. My first MRI a few years ago totally missed my Chiari which was clearly there and not in any way small. My second series was of the head and cervical spine with contrast. It showed not only the Chiari but a large syrinx.
Oddly enough, I have never had any symptoms from the Chiari, only from my syrinx. This is not common but I only mention because it doesn't necessarily follow that your daughter would be symptomatic. It is much more common for the headaches to be in the rear of the head with Chiari but people's symptoms vary so much that it is hard to know what causes what.
I would strongly urge you to stop the chiropractor until Chiari/syrinx have been ruled out. Hopefully your daughter does not have Chiari but if she does the experts will tell you to stay far away from any type of spinal or head and neck manipulations. The Chiari institute in NY even addresses this in one of their articles in terms of seeing so many people who are made worse by chiropractic treatment. Hopefully another look at her MRI or another MRI altogether will resolve that question for you.
Some food allergies can be detected through testing these days. If your daughter can stand it, you might try an elimination diet at home on your own. Read up on how to do it but basically you start out with foods that are very safe in terms of allergies and then add different possible offenders one at a time. It would be an easy way to see what affects her headaches, if anything.
Please keep us posted and I hope she is able to do okay when school starts up.
Jen
A couple of comments to add:
I am so sorry that your daughter, and her parents, are having to go through this. It is so hard to see your child suffer.
I would ask the neurologist to read the MRI again and specifically look for any degree of herniation. As Selma said, some radiologists don't look for it or think it important. My first MRI a few years ago totally missed my Chiari which was clearly there and not in any way small. My second series was of the head and cervical spine with contrast. It showed not only the Chiari but a large syrinx.
Oddly enough, I have never had any symptoms from the Chiari, only from my syrinx. This is not common but I only mention because it doesn't necessarily follow that your daughter would be symptomatic. It is much more common for the headaches to be in the rear of the head with Chiari but people's symptoms vary so much that it is hard to know what causes what.
I would strongly urge you to stop the chiropractor until Chiari/syrinx have been ruled out. Hopefully your daughter does not have Chiari but if she does the experts will tell you to stay far away from any type of spinal or head and neck manipulations. The Chiari institute in NY even addresses this in one of their articles in terms of seeing so many people who are made worse by chiropractic treatment. Hopefully another look at her MRI or another MRI altogether will resolve that question for you.
Some food allergies can be detected through testing these days. If your daughter can stand it, you might try an elimination diet at home on your own. Read up on how to do it but basically you start out with foods that are very safe in terms of allergies and then add different possible offenders one at a time. It would be an easy way to see what affects her headaches, if anything.
Please keep us posted and I hope she is able to do okay when school starts up.
Jen
In addition to the food journal, it might be worth keeping an activity journal. Does she ever experience sudden head pain during the day? Even if it's short lived. Ex...bending over will give me an instant headache and sometimes it short, but that night I will have a worse headache than on a day when I didn't bend over. If she experiences anything like that, she should write it down.
Oh and about the insomnia...I'm sure many here can say it's difficult to sleep with a headache!! Even worse if the pressure of your head against a pillow hurts. Ice packs are my best friend!
Oh and about the insomnia...I'm sure many here can say it's difficult to sleep with a headache!! Even worse if the pressure of your head against a pillow hurts. Ice packs are my best friend!
HI!! Jenshead.... laying down does help, she takes a ice pack to the back of her neck and tries to sleep.Sometimes she has insomia and gets so frustrated cause she can't fall asleep, but once asleep she sleeps good all night. Last night she said she hurt all over her body and just cried. I feel so bad for her and so FRUSTRATED that we can't make her feel better. I'm so impatient when it comes to dr.'s. it seems to take forever when I want answers and she feels so rotten.. I will call today and have her MRI reread. I'm so afraid of when school starts that she won't be able to maintain her grades and activities. Thanks a million for the info!!! :)
COMMUNITY LEADER
Hi, I can see how dance could affect her HA's...when spinning, well that itself can be a problem for a chiarian, but the spotting the quick turning of the head/neck so u do not get dizzy/lose balance...alone could cause issues.
Chiropractors are not suggested for chiarians as the manipulation of the head and neck area can trigger symptoms to bcome worse.
The MRI of the brain w/wo contrast and one of the cervical spine can be done or either one...but u should be able to see the chiari in both of these....that does not mean it will be mentioned as not all radiologists and NS's feel it is nething more than an incidental finding.
"selma"
Once she has a headache, does laying down help? Before my CM headaches got real bad, they would gradually build through the day and become very painful in the evening. Laying down flat on my back instantly helps. So my thought is that she has been up and about all day and then the pain hits. Could be completely wrong, but worth asking!
Again, thank you so much for the comments & info, it's all very helpful. We will start a strick journal of her diet & her activity. Dance class seems to always bring on a HA. We have a referral to neurologist. She did have a MRI of her head but in order to diagnose CM does the MRI have to be of the neck or would her original MRI showed MC? My other concern is that she is on pain meds daily, how long is safe for a 12yr to be taking pain meds? I've also heard that if she has this CM that chiropractic care can make it worse? any one else ever heard of that? Still searching and won't give up!
COMMUNITY LEADER
U may want to keep a journal and do the elimination diet...take something away for 2 weeks and record if there is ne change...reintroduce it and see again is there a difference....
Do this until u find what may be the issue.U can keep track of her activities this way as well to see which ones may trigger her HA's.
Keep in mind..many with Chiari may only have HA's at her age and nothing more....so do not discount it, and do have it monitored as well as check for other possibilities.
Good luck and do keep us posted
"selma"
Great info.. thanks!! She has started her cycle, I do get headaches also with my cycle but not everyday. We did the lactose free diet a few times and didn't really seem to see a difference. Is there actual testing for food allergies or is it trial & error? After talking with a neighbor who's daughter has Chiari type 2 and had all the same symptoms as my daughter. BUT after reading and more reading my daughter only has the headache symptom????? Thanks again for the info... we will look into food allergy. I won't stop till her headaches go away and she can be a tween again!! :)
COMMUNITY LEADER
Hi...since ur DD does have a DX of chiari and seeing her age is 12, it is highly likely that it is a hormonal change as well.
Food allergies do cause headaches, but since chiari is involved, I would look to changes in activities, stress etc....and changes in a child of this age could be hormonal in nature.
Have ur DD try to modify her daily activities to see if that may help....ne thing to relax...warm soaks in a tub ....quiet time.....
Avoid the triggers for chiari HA's...lifting,strain (so a stool softener may be helpful)
See the Health Pages of activities to avoid with chiari.-http://www.medhelp.org/health_pages/list?cid=186
"selma"
I'm having a bad brain day, so excuse me if I'm asking something that has already been asked ...... so she's seen a neuro, a eye doc, her pedi, and a allergist?
My daughter and son suffer from migraines and their pedi neuro has helped me with a migraine diet (basicly foods to avoid that trigger their head aches). My daughter also gets headaches with her cycle and she sometimes takes medication for them. Perhapse your child shares things in common with my children?
Maybe see if sleeping propped up helps?
Hope this helps. I can remember having undiagnosed headaches as a teen, it's so frustrating.
My daughter and son suffer from migraines and their pedi neuro has helped me with a migraine diet (basicly foods to avoid that trigger their head aches). My daughter also gets headaches with her cycle and she sometimes takes medication for them. Perhapse your child shares things in common with my children?
Maybe see if sleeping propped up helps?
Hope this helps. I can remember having undiagnosed headaches as a teen, it's so frustrating.
Sounds like food allergies to me. Have her tested for common food allergies like dairy, gluten, nuts, peanuts, and soy. I hope she feels better soon. That's a terrible way to go through life.
Oh, and constipation can cause headaches, so make sure her digestion is working. Kids don't like to talk about that problem.
Oh, and constipation can cause headaches, so make sure her digestion is working. Kids don't like to talk about that problem.
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