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11/06/2011 12:04 PM

Another worried mom

Posts: 5
New Member

Hi all. I'm glad to have found this forum but I am terrified for the journey my son may be about to embark on. I will fill you all in.

My eleven year old son started having daily headaches sometime at the beginning of this year in which no pain relievers seem to help. He had a CT scan which showed some narrowing of his sinus passages. He then had surgery to correct the passages but a month later, no change. It was then that the ENT referred us to a neurologist. The neurologist ordered an MRI and some bloodwork which all came back fine. He gave us an RX for Topomax and told us to follow up later. Well for some reason, my son's daily headache seemed to resolve over the summer so we thought all was better. He was med free for four months with no headaches.

Well at the beginning of October, he went on antibiotics for bronchitis. It was then at the resolution of the bronchitis, his daily headache returned. It has not let up since. We just spent five days in the hospital to see if they could get his head pain under control and as you can guess, nothing they tried worked. A lumbar puncture also came back negative. They put him on Topomax and basically said he needs to find ways to manage the pain. I was devastated.

He says his pain is in the front of his head and feels like a constant squeezing. He also says sometimes there is a feeling of stabbing on both sides of the forehead. He says the pain fluctuates from about a five to a seven. Evenings so far seem to be his worst time. He has not been to school in a month and we are now looking into homebound instruction through the school. Needless to say, I am not doing well with any of this. How can a mother watch their child suffer day after day and not be able to do anything to ease their pain? The stress it is causing me is just awful.

I know some of you here have spent more time than I have researching this terrible disorder. I was just wondering if anyone knows the prognosis of something like this? My guess is that not many come back to tell their successes but I was wondering if this can possibly reslove itself with time? From what I have read so far, it looks so hopleless. Sad

Also, are their any other moms out there that would mind chatting with me? I'd just like to know how you are coping. I'm not doing a good job right now.


11/06/2011 01:01 PM
tortoisegirlPosts: 3240
Group Leader

Welcome! So sorry to hear about your family's struggle. Glad you joined us though. I'm sure some moms of children/teens will pop on, but I'm also happy to message. I got mine at 19 (now 25) so I can relate a bit. How long has he been on the Topamax this time? It can take a few months. There are so many other treatments to try too. Just takes a lot of persistence and patience. If it is NDPH, prognosis is that it may resolve in the first year or so (especially with him being young and having a previous episode), or else, may continue indefinitely. It can be quite treatment resistant, but I think more so than not, people find something to eventually help.

If he can't manage school, its good you are going to look into the homebound program. he can probably get the work done in less than half the time. I do urge you to ensure he still has some social outlets, even if its just having one friend over for a sleepover or whatever. Do you think going to a therapist as a family might be helpful to talk about what you all are going through? There are some specially trained in helping families cope with chronic illness in their children. There may also be a group for him to join through the doctor or hospital for children coping with chronic pain. I have heard of some of these (most outpatient, some inpatient). They can chat with other kids, talk about how they are feeling, and they may pursue topics such as biofeedback, relaxation, etc.

I have learned to cope better over the years. I know the beginning is so overwhelming though. I have also found some meds that help. Everyone is so different so its often not worth mentioning them. Just be persistent with the doctors that they try something else as soon as the time limit is up for it working. I think these boards represent the worse cases. Those who have theirs resolve or aren't as affected by the pain, likely wouldn't post. I'd keep that in mind. There really aren't any good stats on this though. I've seen them wildly vary on the percentage of people who spontaneously recover, respond to treatment, etc (likely due to small sample size and differences in either just being NDPH patients, or including Chronic Daily Headache). CDH is moreso a increase in frequency of headaches to daily, unlike NDPH which is daily from the start, often constant. Best wishes.

11/06/2011 01:20 PM
Posts: 9
New Member

Hi! My daughter (age 16) became sick in May with a headache and has it ever since. We had MRA's Neck and head) and MRI (head) and they all came back normal. We started with Venlafaxine in June and was on that till early September when it stopped working.Her pain has been a 4-10 pain level since May. She started Minocycline and Singulair in late September. Her pain has gone down to a 1 then back up since starting this. We have done physical therapy-helping for a short time afterwards. Now ,she started with accupuncture 3 weeks ago with better results lasting a few days with a much lower pain level. It is so hard for her trying to keep up with school work when she is hurting. It is such a sad thing for our children to have to go thru this. They look fine on the outside but are in so much pain.We feel hopeful that something is working since her pain is now fluctuating. She usually gets the headache about 2-3 hours after waking then has it till bedtime. I have learned to be her advocate. I don't know when this illness will stop but we are not giving up! I gather as much info as I can and ask alot of questions.This has given me strength. We switched Doctor's and have a much more caring Physician now than in the summer. I also have days that I don't cope very well with her being in pain. I think My suggestion on coping would be to take a break for yourself daily. Take care!

11/07/2011 03:10 PM
EnbeePosts: 1556
Senior Member

Hi and welcome, I'm sorry to hear about your son Sad Quite a few young people seem to have this disorder, which I'm sure you will notice if you read many of the posts.

My pain is similar to your sons. My pain is mostly in the front and is like my skull is too small. I do get some stabbing and throbbing from time to time and I also have noise and light sensitivities and vertigo and nausea. Evenings are definitely worse for me too.

There is no magic cure but there are lots of different meds and treatments he can try. If the topamax isn't helping after a few months (it can take awhile to have an affect) there are definitely other things he can do. There is a pinned post about treatments that have helped people. That might be a starting point for some ideas to discuss with the doctors.

Over time most people find something that at least helps. Some end up pain free and most of us at least find ways to cope better. It is scary now but it does get easier as time goes on. The key is finding a good doctor who is willing to try treatments and having a supportive network of family and friends.

Any questions you have please ask, everyone here likes to help any way we can.

11/08/2011 06:43 AM
Posts: 24
New Member

Post edited by: njmom, at: 12/21/2011 05:13 AM

11/08/2011 10:37 AM
Posts: 442

Question - during antibotics his headpain went away? Upon completion of the antibotics, it returned?

11/08/2011 07:03 PM
Posts: 5
New Member

Thank you all so much for replying to my post. I feel so bad for anyone who has to deal with this pain on a daily basis and not have anything to relieve it. I never knew anything like this existed!

I will look into some of the ideas you guys have suggested. We are still waiting to see if the Topamax does anything before we move on to something else. I'm not sure I have high hopes for it but we won't rule it out yet. I also got a script for Elavil but I am worried since my son is already overweight. I may hold off on that. Has anyone tried Gabapentin? I saw somewhere that it might be helpful but I'm not sure if it's safe for kids.

Ramilin - my son wasn't having the headache before he went on the antibiotics. It was after his illness passed that the bad headache started. I had thought about Lyme's disease but he doen't have any other symptoms. Just the 24/7 headache.

I am praying that this will be short lived but am trying to prepare myself for what may be a long term problem. I am praying for all of you who deal with this disabling condition. No one should have to live life with chronic pain.

11/08/2011 07:20 PM
tortoisegirlPosts: 3240
Group Leader

Topamax, Elavil, and Gabapentin/Neurontin are all quite common preventatives (I've tried all). Most (but not all) medication-related weight gain is from the med causing increased appetite or decreasing your metabolism (spontaneous weight gain is more rare), so with some attentiveness, I believe it can be prevented or minimized. The safer thing is to avoid it however I imagine. Nortriptyline might be a bit less likely, or definitely Cymbalta (but I think that would be bottom of the list for kids as it has a pretty severe suicide type warning for young folks. Not too sure on safety in children. Few of these are even approved for headache, let alone use in children, but I'd talk to a doctor you trust and maybe a pharmacist.

Also, you could try searching what meds some of the parents here have posted that have been tried on their children. I know in more severe cases they will use just about anything, although certain meds (especially older meds where they have more experience). Lyme can present with just headache and no other symptoms until its pretty far along (apparently). I think it would be more important to look into if there was a possible exposure. Best wishes.

01/27/2012 10:06 PM
Posts: 25
New Member


I just read you r post.

My daughter had a constant headache for 10 months before we found a solution for her. She was on the typical meds for migraine and nothing worked. DHE IV treatment failed. All the Mri's and CT scans came back normal. Then nerve block were tried with very minimal relief. Ultimately, she found relief with nerve decompression surgery. I do think she was a prime candidate for this procedure as her headache stopped after two procedures. WE have a website about her journey If you click on the "Dayna's Story" tab, you will find, in detail, what she went through. She was able to go to school but spent much time with the nurse. Our honor student was classified as a temporarily disable student her junior year.

After seeing what she went through, although she presented like a headache, I really believe now it was a neuralgia. We went to the world renowned Diamond Headache Clinic and got the diagnosis of migraine after very little testing. I guess hind site is everything.The surgery did wonders for her. The Clinic has no interest in the progress she has made with the procedure. It was a very hard decision, especially when every one around us did not support our decision to follow through with the procedure.

I hope that by this time your son has found relief. Maybe nerve blocks are an option. If you have any questions, please ask. I can be contacted directly through the website.

01/27/2012 10:33 PM
tortoisegirlPosts: 3240
Group Leader

Welcome elfinee! Thank you for sharing your daughter's story. So glad your daughter is now pain free. We need more success stories around here. I'm shocked they did nerve decompression surgery after 10 months? More so because the headache has been known to go away on its own in the first year or two so its odd they would do something so drastic before that time is up. Best wishes.

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