Son With Daily Headaches/Neuralgia

By Cindy06 Monday, October 27, 2008

- A
- A
- A

My son is 15 and has daily headaches since he was 6 after falling and hitting his head. He has had 3 MRIs and 2 CT scans done since then that were all normal. He also had a soccer goal fall on his nose when he was 8 and broke his nose. He recently had sinus surgery or correct a deviated septum, but it did not help the daily headaches at all. We was diagnosed with supraorbital neuralgia and has been put on various anti siezure meds the past 8 years. Injectable Imitrex helps but he doesn't use it everyday. He has tried oxygen and was once diagnosed with cluster headaches but the 02 did not seem to help.

He always wakes up with intenese pain above one eye and has 2-3 more attacks everyday. He is greatly affected by weather changes even windy days cause pain. He sees a headache specialst and has been to 3 neurologists in the past. He also sees a pain doctor who has tried various treatments including radiofrequency, botox, nerve blocks, and now has a trial stimulator implanted but it is not helping. We are planning on having it removed this week. He has had more leads put in and the doctor even moved the orginal leads but it had no effect.

He was recently diagnoised with adrenal insuffiency with a positive ACTH stim test, but then we later found out his adrenal glands were stressed because of a nerve block and he had "steriod withdrawal syndrome". He was put on cortef for about 4 months until we were able to wean him off it. His headaches were no better on cortef so it's my belief his adrenal function is not the problem. We do have another appointment for further testing now that he is off the steriods.

We are considering decompression surgery, or at least getting the opinion of a surgeon to see if he is a canidate for the surgery. I would be interested in hearing if anyone has gotten any good results with the surgery.

Cindy

Comments (26) | Add comment

Nancy Harris Bonk, Health Guide

10/28/08 3:32pm

Hello, and welcome to MyMigraineConnection.com!

I'm so sorry to hear about your son's headaches. It is difficult to watch our children in pain. Let's see what information we can give you that will help you and your son.

The last you probably want to do is see another doctor, but before considering invasive surgery, may I suggest your son see a true Migraine specialist? This doctor is an expert who devotes his entire practice to treating people with Migraines and headaches. Having said that, not all Migraine/headache specialists are created equal. Neurologists may be fine doctors, but aren't really able to specialize in any one area (even though they may claim to be headache specialists) because they treat so many different conditions like MS, epilepsy and stroke. Migraine and Headache Specialists - What's So Special? is a great article that explains the importance of seeing an expert. After you read that you may want to look for a Migraine specialist on our patient recommended list HERE. You may need to travel a bit to see a specialist. Some members here travel from WV to TX to see theirs!

Weather changes, food, lights may all trigger a Migraine for some people. Has your son every kept a Migraine diary? It is a fairly easy thing to do, and may determine what is and isn't working for his Migraines. You can find our Migraine diary HERE.

Thank you for creating a SharePost. SharePosts are a form of blogging, and there are many things you can do with them. You can share an experience, suggest something that's helped you, use SharePosts as a Migraine and headache journal, and many other things.

We also have a discussion forum that you may want to check out. Especially if you have questions or are looking for information, you may find the interaction on the forum to be quite helpful. We have quite a few parents of Migrainuers who come to the forum for support and information. To get to the forum, just look for the orange box marked "Manage" and click on the Migraine Forums link. Because our forums are maintained by a third party, you'll need to register for the forum. You can use the same information you used to create your community log-in if you like. If you want to go directly to the forum, you can click HERE.

Along with your personal "My Home" page and the discussion forum, you'll find links to a great deal of helpful information and a spot to sign up for our free newsletter on the main page of our site, http://www.MyMigraineConnection.com.

If you have any questions, please feel free to post them to the forum or send me a message through my profile.

Welcome again,

Nancy Bonk
MyMigraineConnection.com Expert

Sue M

11/25/08 7:50pm

My daughter will be 14 next month. She fell and hit her head in 2nd grade. At the end

of 5th grade she started complaining of severe eye and head pain. This is were our

nightmare began. She has had multiple MRI'S AND CAT SCANS. She has had every test

possible done to her. She has not been able to attend school or do anything for 3 years. She has been hospitalized for over 30 days in 3 different states including Mayo

where she had MVD surgery with no success. We have tried every kind of medication

and nothing helps. We are also looking for answers and help.

Sue

Cindy06

11/25/08 9:02pm

Sue,

I'm very sorry for you and your daughter for what you've been through. This has been a nightmare for us also since my son fell and hit his head when he was 6. He also had a soccer goal on his face and broke his nose when he was 8 but he already had the daily headaches since the fall. We have taken our son to many doctors the past 8 years and tried every headache medication and many alternative treatments too. He has had acupunture, chiropractic, physical therapy, cranial sacral message therapy, allergy treatments twice, sinus surgery, wisdom teeth removed, braces twice, a nerve stimulator implanted for 3 weeks, radiofrequency, botox, occipital nerve blocks, diagnosed with Addison's disease, a positive test for Lyme disease, cervical headaches, daily chronic headaches, cluster headaches, supraorbital neuralgia, and now we are considering decompression surgery. He is no better now than he was 8 years ago. He also can not go to school and has not been able much of time so I have home schooled him. We have been taking him to a headache specialist for 2 years and he has seen 3 different neurologists and had many tests done. I'll be praying for you and your daughter.

Cindy

SUE M

11/26/08 1:58pm

Thanks Cindy for getting back to me. We have also tried many of the treatments you have tried with no success. We are seeing Dr. Merle Diamond in

Chicago at The Diamond Headache Clinic. I'm sure your son is very frustrated as is

my daughter Jamie. We are looking into something new that a friend suggested to

us called Irlen Syndrome. I don't know alot about it yet, but I can share more

when I get the information. We just take one day at a time. Thanks for your good

thoughts and prayers. We will be thinking about your family also.

Sue

Cindy06

11/26/08 3:36pm

My son's headache doctor believes his neuralgia is caused by dysautonomia. He was diagnosed with vasovagal syncope a few months ago by a cardiologist but no futher cardiology tests were done. It seems like he has trouble regulating his BP and pulse. Either a fast pulse or drop in his BP seems to make the nerve pain worse or even trigger it at times. His doctor was planning on trying Propranlol if the current mediction does not help and it doesn't seem to be after being on it almost 4 weeks. He said he might try adding Neurotin too so I called him today and left a message with the nurse that the current medication is not helping. We had considered taking him to a children's dysautonomia clinic in Ohio last summer, but decided to try the other treatments the headache doctor and pain doctor recommended and some of the medications to treat the dysautonomia. His clinic is also doing more research in dysautonomia. I am hoping his doctor will know how to regulate his nervous system and get the BP/autonomic problems resolved. I think that will also be the answer to stopping the neuralgia in his case. I'm not sure how much of his neuralgia is caused by past injuries to the nerve and how much is related to the dysautonomia or maybe they are interconnected somehow. He is also missing a frontal sinus on the affected side but they do think that is causing any of the neuralgia.

Cindy

Cindy06

11/26/08 3:45pm

Sue,
I just looked at an few Irlen Syndrome websites and this might be a possibilty for Ryan also. He has trouble looking at the computer and that will trigger the neuralgia, usually fairly quickly. Also reading triggers the pain but I do not know how the flouresant lights affect him as he is not in them very much now since he trying to do on-line school. He can not read or study for long periods at time so I might do some checking into this as a possible trigger even if the neuralgia is caused by some other imbalance. The glasses might allow him to study for longer periods.

Cindy

Sue M

11/26/08 3:54pm

Hi Cindy,

I have often questioned if something was wrong with Jamie's heart. Does your sons

hands or feet turn blue or purple? When Jamie's pain is bad or when she is in the shower her feet turn blue almost black. They think she has Raynaunds syndrome.

I will be looking into the dysautonomia never heard of it before. We have tried the

propanol and up to 4000mg of Neurontin with no improvement. Where do you live

and are your current doctors headache specialists or neurologist? Thanks again for

the information it gives me hope as to look for answers maybe in a different place.

What are the treatment medications for dysautonomia?

Sue

Cindy06

11/26/08 6:24pm

Sue, We live in Missouri and see a very good doctor at the Ryan Headache Center. Before going there he saw a neurologist for 5 years and tried various treatments. His hands and feet do not turn dark but he can not take showers. Heat makes his BP drop and triggers the pain. He takes baths but short and not too hot. Summer heat triggers the pain and so do car rides. He gets car sick just riding across town and the car movement triggers the headaches. He has a lot of nausea and throws up fairly often sometimes. He has various anti nausea meds on hand but sometimes they do not help at all. He is pale and white as a sheet, not even a pinkish tone to his skin. His feet and arms are cold yet he says his body feels hot all the time. He had the dysautonomia also when he was 6 and had several serious infections but I didn't know anything about then or which doctors to see. I'm not quite sure what helped the dyautonomia then, but the headaches never went away. The nausea, eyesight, and dizziness got better.

The headaches did get better during the summer months until this last summer. Since last March he has had the pain everyday almost continual. I do not know of a good treatment for dysautonomia. From what I've read, what works for one person might not for someone else. The doctors have to keep trying various medications to get the autonomic system "reset" or balanced. I read prozac is often used but Ryan has not taken that yet. His doctor is trying a different treatment. There are some very good children's dysautonomia doctors in Ohio who were highly recommended to me. We were going to take him there last summer but he was too sick to make the trip. Ryan has also had the test for PFO (hole in the heart). One doctor told us when kids get dysautonomia they usually outgrow it at about age 19 or 20 so I'm hoping he is right.

Cindy

Sue M

11/26/08 8:01pm

Cindy,

Your information is very interseting to me and my family. They have a lot of similarities. Jamie was also treated for Lyme disease. The doctors here in Wisconsin

have not been all that great, thats why we have traveled other places for care for Jamie. They have told us that the pain was all in Jamie's head and that she was making this up to get attention. The doctors in Chicago and in Mayo took one look

at her and could tell she was in tremendous pain. This Dysautonomia is something

I'm going to look into. Can you tell me what kind of doctor made this diagnosis?

Have a Blessed Thanksgiving. I would like to keep communicating with you if that

would be ok?

Sue

Cindy06

11/26/08 8:48pm

I've been considering taking him back to the doctor who treated him for Lyme disease to see if he thought this might be related or if he might still have the infection. It might be worth trying antibiotic treatment again. He had a positive WB in 2003. We have good Lyme doctor in MO but he is about a 4 hour drive from us. He did not have many headaches for about a year after the treatment. That was when he was in third grade and he was able to attend public school that year. Then they started back up the following fall but I was not convinced he shoud remain on antibiotics or if the neuralgia was from something else.

The headache doctor diagnosed the dysautonomia based on his BP, syncope and symtpoms. Normally it diagnosed with a tilt table test but I was afraid for him to have that test. They inject something to cause the BP to drop and he seems to react to many medications. This doctor said dysautonomia is a fairly common problem (in various degrees) in many people with chronic headaches. My older son who is 23 now, has it some degree but as severe as Ryan. He had daily headaches but not neuralgia. He is on Toprol, which also can help regulate the pulse, and some supplements that seem to help reduced the intensity of the headaches. He used to get them everyday but the Toprol has reduced them. He also takes Arginine, Bacolfen and melatonin at night.

Ryan also had a positive test for adrenal insuffiency last march and was put on cortef for a few months. The doctor believes he had adrenal suppression from a steriod injection. He is going to have more tests done on our next visit with his endocronologist in Dec. and check his cortisol level and hopefully other tests done. Taking cortef seems to only make his neuralgia and snycope worse. Prednisone does not help the neuralgia either so I don't feel like his adrenal funtion is the only problem.

Cindy

sue m

11/27/08 9:19am

There appear to be alot of similarities between your son and my daughter. The only

things Jamie has been diagnosed with are the migraine headaches,Raynaunds syndrome

and Scoliosis. One doctor said her Lyme Test was positive the other said it might be.

We had her on the antibiotics for the Lyme Disease for about 4 months with no improvement. Jamie is also very pale and has put on alot of weight from the medications we have tried. One of the ones that helped for a little bit was Lyrica.

We are seeing a chiropractor now, but have had no improvement. Do they think

that puberty has anything to do with his headaches? They thought the hormonal changes with Jamie have also made her headaches worse. We are stumped right now

because her headache doctor does not know what else to do except to keep trying

new medications, and I think we have tried them all. We saw an endocrinologists

who did hormonal testing and all of her counts were normal.

Thanks again,

Sue

Cindy06

11/27/08 11:02am

Ryan has some neck problems with a lot of neck pain, and has seen an orthopedic doctor who sent him for physical therapy. He was not able to do the exercises at that time because of the extreme nausea he was having and neuralgia 24/7. He has weak neck muslces and his upper spine is starting to curve and is missing the lordosis (outward curve). Of course all the chiropractors we've been to say the headaches are cervical related. I feel like his neck is part of the problem and perhaps he may not be getting good blood flow to his brain because of his neck. I was planning on having an ultasound by a cardiologist or some type of scan to look at his carotid arteries in his neck. We are not trying low level light light therapy the headache doctor recommended. We found one chiropractor that does that treatment. He's only been 2 times and it could take 10 treatments to start helping the nerve to heal. Let me know if you would like the website the doctor gave us about the Laser treatment. There have been many impressive studies done. He also gets neck messages twice a week. I don't believe puberty has much to do with Ryans illness. He did go through a rapid growth spurt last year right before the neuralgia worsened and started happening everyday. He is suddenly stopped growing when he got so sick last March and hasn't grown in height since. Has Jamie's level of pain and HA frequency stayed the same since 5th grade?

sue m

11/27/08 7:45pm

Jamie's pain has been increasing over the years and she has a headache 24 hours a day seven days a week. She has severely declined since June. Could you give me the web sight about the laser treatment. I would love to look into that. Jamie has grown

tremendously over the past two years and is nearing 5'8''. Her weight has also gone up due to all of the medications. She is a tough girl and fights this everyday, but

it is so hard to see her suffer knowing that I can't do anything to take the pain away.

She just wants her life back.

Sue

Cindy06

11/27/08 9:18pm

Ryan's pain has also increased just since last March. It's so hard to see our kids suffer with pain. He also gets so discouraged and wants his life back. If there is a way to email privately in this group, you could email me your phone number and I would be glad to call you sometime. I"m not sure if this group has that option. The site is www.laser.eu and there is a place to click on abstracts. I have been checking into buying a home laser. The chiropractor is checking one for me to see if it is a good one. I found one for $3000.00 but I'm leary of ordering things from the internet. She seemed to think a good laser would cost more than that so I'm not sure about it yet. She is checking into that one for me.

Teri Robert, Health Guide

11/28/08 1:17am

Cindy,

It breaks my heart to read about all of Ryan's pain. I know you're taking him to the Ryan, but it may be time to consider another specialist. That's nothing against his current specialist, but NO specialist is the right one for every patient. Sometimes, fresh eyes and different ways of thinking can turn things around.

Regarding this laser -- I went to the site, and clicked on the button for the English version. If I'm translating other languages correctly and understanding the English version, this is a cosemetic laser. I know of no laser treatments that have been successful in treating headches or Migraine.

As for exchanging email addresses, we don't encourage that as posting email addresses is a good way to be targeted by spammers and scammers. You and Sue may find that you could have a great discussion on the forum, and that it would be beneficial to other parents as well.

with hug,

Teri

Cindy06

11/28/08 12:18pm

Teri,

Thank you for the reply. I do like our doctor very much and feel like he doing as good as any doctor could considering the complexity of Ryan's illness/condition. I've found it's not easy to change doctors in the middle of a crisis either especially if we have one we can rely on. I realize this type of neuralgia is not easy to treat and it may take more trials or combinations of medications or treatments as other doctors have told me. Usually finding the right combination of medications is the key. At this point when a person's child in such pain, and there is a treatment available that might help and is not harmful in any way, then what is the harm in trying it, at least for awhile? We've tried acpuncture many times in the past without any relief and various types of head messages.

I'll have to recheck the website the doctor gave me. I may have posted the wrong site. I'll have to look in my notes the doctor gave me. I was relying on memory or I'll call and ask him for it again. I think I may have made an error, but I'll check on it.

Cindy06

11/28/08 1:24pm

Teri,

I looked up the website again and there is a place to click on abstracts regarding certain conditions. Low level lasers have been used very successfully for the treatment of TN and other types of nerve injuries. The website contains a collection of information about various other uses of the low level lasers. You can do a search to find the abstracts. It is not only used for cosmetic purposes. As you mentioned earlier, I also do not know of any cases where the laser helped migraines or headaches, but that is not what our children are suffering with. I would rather he have headaches or migraines than this type of horrible nerve pain. They are easier to treat and prevent. I know this because my older son has daily headaches and manages them by taking a few medications daily and treating the headaches that do occur. He is able go on with his life and lead a fairly normal life and will be graduating from college in May. I want that for my other son also.

I know quite a lot about migraines and various treatments. My husband also used to suffer with chronic daily headaches/migraines and is now almost headache free because of his treatments. He is also able to work and function. Again, the condition he has is very different than what Ryan has to deal with everyday and has for the past 8 years. What Ryan has is an injured nerve from a past injury (which he has had twice), past Lyme disease, or perhaps some other past infection of the nerve. I can only make guesses as to why his nerve is not functioning properly.

When a muscle contracts around or near his supraorbital nerve, it begins to get irritated and cause a great deal of pain. When my forehead muscles contract I may get a slight headache or feel one starting and some throbbing in my forehead or in the back near the occipital area, and take a medication such as Aleve or just plain tylenol and it goes away. When his nerve gets pinched or touched/entrapped by surrounding muscles and/or blood vessels it screams very loudly. It is my opinion that the nerve might possibly heal if the muscles are kept away from the nerve either by relaxing medications such as Bacolfen (which is often prescribed) or others, for an extended period of time to give the nerve a chance to heal and also address the neurotransmitter imbalance caused by an dysfunctional autonomic system. If those things do not help, then eventually the only option might be decompression surgery which we hope to avoid.

Most other forums I have joined have at least allowed private emails, but if this group does not allow that, then that is fine too. There are things we might want to share on a public forum when it concerns our children. I'm including a website from the previous link which includes the various abstracts regarding laser treatments. It is being used for many conditions and healing purposes not only for cosmetic uses.

http://www.laser.nu/lllt/lllt_science2.htm

Sue m

11/28/08 7:53pm

Cindy does your son have a diagnosis of trigeminal neuralgia? They thought Jamie had this and that is why we did the MVD WITH NO SUCCESS and a glycerol injection.

Jamie truely battles severe eye and head pain every day. There a an excellent doctor

at Mayo in Minnesota who treats TN. Dr. Pollock is one of the top surgeons in the country. We have reached a stand still with her doctor and really don't know where to turn next.

Sue

Cindy06

11/28/08 8:39pm

Sue,

He does not have TN. The pain specialist was able to rule that out. TN is very different as far as the triggers and location. Just a touch on the face will trigger TN or even a cold wind blowing on the face will trigger it, brushing teeth, or touching the area will trigger TN. There is tenderness on the supraorbital notch which is characteristic of supraorbital neuralgia and the pain is intense right on the nerve and then radiates up his forehead but only one the one side.

When the doctor did the nerve block in the supraobital nerve he did get relief. He said he could do that more often but he only got about 6-8 hours relief and we decided that injecting it more times might only cause more damage to the nerve so we declined his offer. I'm so sorry Jamie has this horrible pain everyday. Did her pain get worse when weaning off of any kind of anti seizure drug? Ryan seemed to go into a downhill spiral after weaning off Topamax last March and I've always felt like this last decline was related to weaning off the Topamax. Prior to that the pain was not continual and seemed to correlate with the weather changes. What state are you in? I am very happy with his doctor. He thinks "out of the box" to help Ryan. I would highly recommend him if the Diamond clinic can not help Jamie. We are considering trying botox again only this time across his forehead instead of close to the nerve. Has Jamie had botox injections? I talked to another parent whose son has this type of neuralgia and she said botox in the forehead area always helps him. He has also had the decompression surgery done. Dr Ducic at Georgetown Univ said he thought he could help Ryan with the surgery but we are waiting a few more weeks before deciding on the surgery and will probably try botox again in his forehead before considering surgery.

Sue M

11/28/08 9:51pm

We live in Wisconsin and they have never tried Botox. Jamie has been on so many seizure medications, Trileptal and Lyrcia are the only 2 that helped somewhat, but

what happens is they just stop working. We would take Jamie anywhere if we thought

we could find someone to help her.

Cindy06

11/28/08 10:49pm

Sue,

Tompax also quit working for Ryan and Lyrica never helped at all even 350mg. I think you can send me a private email by clicking on my name in blue letters at the top of the comment.

Teri Robert, Health Guide

11/28/08 11:57pm

Sue,

If you were a registered member, I could explain some things to you that I explained to Cindy.

Please note the comment I posted earlier for both of you. This is not our discussion forum, but I think both of you could benefit from the forum where we have a section specifically for discussing children's issues.

Teri

Sue M

11/29/08 9:46am

I will be registering today.

Thanks,

Sue

Cindy06

11/29/08 1:37pm

Thanks for info Teri. I did not realize this was not a forum for discussion.

Cindy

simbjam

11/29/08 2:57pm

I registered today. I will post Jamie's story later. She is having a really bad day and

right now the only medication we have for her is xanaflex and trazadone. I' m going to help her get into bed. I will be in tough later. Thank You.

Sue

Teri Robert, Health Guide

12/ 1/08 1:49pm

Cindy,

I know it's confusing. You're welcome to have conversations here, but it's much easier to follow longer conversations in the forum.

Wow. I so wish I knew something to suggest to you.

Teri

Son With Daily Headaches/Neuralgia

Ask a Question