Please help. My 14 year old daughter has had a headache for 25 straight days. It is a constant headache. It does not come and go. She has been in pain for every second of the 25 days. The only “relief” she gets is the few hours of exhausted sleep that comes each day. Even then, she wakes up repeatedly due to the pain and complains about nightmares in which her head is being injured. It has been nearly a month and she is literally going crazy from this pain. Her pain is usually over her whole head, although there have been some short periods when it has been only on the left side. The greater the pain level, the greater her sensitivity to light and sound. She sometimes has debilitating spikes of intense pain that last around 5-10 minutes. These are so intense that she will clench up every muscle in her body and curl into a ball grinding her teeth. We keep stress balls and a mouthpiece next to her for these scary attacks. Without the stress balls she will clench her fists so tightly that her nails will cut into the palms of her hands. After these attacks pass, she is exhausted and typically drifts off to a semi conscience state for about 15 minutes. The only improvement in her condition is that she was experiencing these attacks about five times a day, now she has about one a day. On the typical day, her headaches are worse in the evening, but this is a guideline not a rule. Over the past three days, she has started having frequent nose bleeds. They seem to be unrelated to her level of pain. These may be caused by crying. Depression is now setting in. She is an athlete with top grades. These headaches started in mid July. She was very excited about starting to play high school soccer and starting her freshman year. In preparation for soccer she had been running and exercising every day. She was staying hydrated, eating healthy and eating enough calories. She was in excellent physical condition. Since the headaches started, she has not been able to join the soccer team or even exercise on her own. To make matters worse, all of her friends are playing soccer and she is feeling left behind. Attending practices and games and sitting on the sidelines is worse. This intensifies her headaches due to the noise and lights. Also it reminds her of what she is missing. So, she is isolating herself from her friends both directly because of her pain and because of the sadness caused by seeing them having fun without her. Her personality is changing. She is becoming pessimistic and angry. School started four days ago. She is trying to tough it out. She has not missed any days yet, we know there will be significant missed school sooner or later due to this condition. She is having trouble concentrating and is getting frustrated and further depressed about her inability to perform well academically. She had the highest GPA in middle school and had hopes for a high level of academic achievement in high school. She is driven, and she truly enjoys studying, learning, and challenging herself academically. She is seeing her hopes of academic achievement slip away. If this headache problem is not controlled, she cannot realistically expect to perform well in school. This is devastating to her emotionally. She has seen a myriad of doctors. She has been hospitalized. Her CT scan and MRI show nothing wrong according to her neurologist. All of her doctors think she is having migraines. They are unclear on whether this is a single migraine that simply will not go away or if they are migraines stacked on migraines occurring so frequently that it is one continuous headache. She has been taking Amitritylene (25mg) for the last 16 days and has shown no improvement. She has been prescribed Toradol, Fioricet, and Prednisone at various times and none of them have helped relieve her pain. For the most recent week, she has been off all prescription pain medication because we thought she may be suffering from rebound headaches. She is now taking just three ibuprofen tablets a day, and there is no improvement in her pain level. So far medications have been a dead end for both temporary pain relief and for ending this headache. Another avenue we have pursued is with her TMJ. About year ago she completed her orthodontics and had braces removed. During the orthodontic process, she developed an issue in her left jaw. Basically, when she opens her mouth widely, her jaw pops and there is a slight amount of discomfort. We wanted to investigate this as a cause or contributor to her headaches. We saw an oral surgeon. His assessment was that she did not really have a TMJ problem; it was more that her left jaw joint was looser than the normal person. When she opens her mouth wide enough, it was hyper extending a little bit. Basically, it was his opinion that this had nothing to do with causing headaches and really wasn’t a problem. The only discomfort would be at the moment of hyperextension and it would not have any lingering effect once she closed her mouth. His examination included an x-ray of her jaw and everything looked normal. We have researched migraine triggers. The one that we can control is food. The three food triggers that seem to be most common are alcohol, caffeine, and foods with high levels of tyramine. Since she is fourteen, the alcohol is not an issue. We have cut all caffeine out of her diet. She has consumed no sodas, no coffee, no tea, and no chocolate for many days. Over the last two days we have eliminated all foods that have high amounts of tyramine (cheese, processed meats, certain fruits, etc.). We have been very strict about what she eats. It is still early in the low tyramine diet, but so far she has had no improvement. If high tyramine food is a trigger, it has now been nearly 48 hours on a low tyramine diet, so I would hope to see some improvement by now. Her headache has gotten worse. It is very difficult to get appointments with specialists in Chattanooga. My wife has spent much of the last three weeks on the phone begging to see doctors. They typically have the attitude that is it just a headache and we can wait few weeks or months for a convenient appointment time. If it is worse than that, we should take her to the ER. We have taken her to the ER twice and they stick an IV of pain medication in her that doesn’t help with her pain and then send us home. Some of the doctors chastise us, because a headache is not an emergency. I try to be patient with her doctors. I understand they are busy. I understand they may have patients with issues they consider more serious. But I may physically block the next doctor from leaving the room before answering all my questions. If I hear one more doctor say that it is “just” a bad headache and should go away on its own in time, I’m afraid I will lose it. It has been 25 days of constant pain. So what are my questions and what is my plan going forward? Medical Follow Ups: She has an appointment with her neurology group in three days. They are the only group in the city who will see patients under eighteen years old. It is very difficult to get an appointment with them. The earliest appointment we could get with an actual neurologist is five months away. We were able, with her pediatrician’s help, to get an appointment with a nurse practitioner in the group. I don’t know what to expect from this appointment, but my plan is to not leave until I have firm answers to the questions below. Food triggers: I plan to keep her on a low tyramine diet with no caffeine. It is not helping yet, but it may be too early to tell. Food triggers are simply not well understood. Maybe she has another food trigger that is not related to caffeine or tyramine. We are keeping a journal of her headaches and what she is eating and I really don’t see a clear pattern. I am considering an inductive approach rather than a deductive approach. Would it make sense to put her on a very restrictive diet, like bread, water and vitamins for two or three days just to eliminate food triggers as a possibility? If it worked, then we could slowly introduce foods back into her diet. If we try this, how long should it take to eliminate food triggers as a possible cause? Pain Medication: She needs pain relief and she needs it right now. Are there any non-narcotic pain relief drugs that are safe and we haven’t tried yet. Non Narcotic Pain Relief Drugs Acetaminophen – (Tylenol & Fioricet) – did not help, Fioricet seemed to make pain worse Aspirin – (Bayer) – may have helped a small amount Bromfenac Caffeine – (Fioricet) – did not help, seemed to make pain worse Choline and magnesium salicylates Choline salicylate Celecoxib Diclofenac potassium Diclofenac sodium Diclofenac sodium with misoprostol Diflunisal Etodolac Fenoprofen calcium Flurbiprofen Ibuprofen – (Advil) – may have helped a small amount Indomethacin Ketoprofen Ketorolac – (Toradol) – IV dose seemed to help some. Oral doses did nothing. Magnesium salicylate Meclofenamate sodium Mefenamic acid Meloxicam Nabumetone Naproxen Naproxen sodium – (Aleve) – did not help Oxaprozin Phenylbutazone Piroxicam Rofecoxib Salsalate Sodium salicylate Sulindac Tolmetin sodium Tramadol Valdecoxib I want to know about each one on this list. Could it help? What are the side effects of each? If the ones she has tried have not been effective, is there another one to try on this list? Rebound Headaches: She is currently taking three ibuprofen tablets a day. This has been the case for the last week. It doesn’t really seem to help much if any. Should we consider going cold turkey to make sure that this isn’t some kind of rebound headache? Are three ibuprofen tablets enough medication to cause rebound headaches? If we try this how long should it take to eliminate rebound headaches as a possible cause? Hormones: Migraines are more common in women and usually start during early adolescence. This fits the pattern we are seeing. Many women report that the migraines seem to be tied to their menstrual cycles. My daughter’s headache started about a week after her menstrual period. I have read where some women have had success controlling their menstrual migraines by regulating their hormones with birth control pills. When I mentioned this to her pediatrician, she laughed and said it was a ridiculous idea. I’m not dropping it. I’ve heard too many women say that it worked for them. Should she see an endocrinologist? Are there tests that can be done to see if her hormones are out of balance? It seems relatively harmless to try birth control pills. Is it worth a shot? What is the risk? Zofran: Just prior to the onset of her headaches, she had a rather persistent stomach bug for about a week. Her pediatrician prescribed Zofran to control her nausea. She took it for two or maybe three days. It was while she was taking Zofran that the headache started. It was just a normal, but persistent headache. A very common side effect of Zofran is that it causes a headache. The headache has not gone away and has greatly intensified. Could Zofran be the root cause? Could the Zofran or the headache caused by Zofran start some kind of migraine cycle? Has this type of thing happened to anyone else taking Zofran? Stomach Bug: As I said above, this started with a stomach bug. The bug was really never diagnosed. She never had a fever. Her white count was normal. I do not think anyone else she is around ever got sick? Could it have been food poisoning? The only symptom was persistent nausea that lasted about a week. What could have caused this? Could it be the underlying cause for the headaches? Could this be some kind of virus or condition unrelated to typical migraines? Could it be something that changed from a gastrointestinal issue to a headache issue? Development Venous Anomaly: When I said her MRI was normal, I carefully qualified it with “according to her neurologist.” There actually is a fairly rare anomaly called DVA, in which the veins in her brain are arranged differently from most people. The neurologist dismissed this as a cause of her headache. What I have read mostly agrees with his opinion that DVA is not a problem. But, I have come across rare occurrences where people do think they have headaches caused by DVA. I also have found some medical research that when a DVA is accompanied by another anomaly called a cavernous malformation (CM), it can be a cause for persistent headaches. Is there any way to be absolutely sure the DVA is not a cause? Are we absolutely sure from the imaging that she does not also have a CM? Is there any test or method to diagnose DVA & CM headaches? Is there any treatment for DVA and CM headaches? If there is a non-invasive treatment, can we try it? Other Medical Treatments: • Chiropractor/Physical Therapist – Is there any value visiting a chiropractor? Could it hurt to try? Could the cause be something more physical in nature, like a pinched nerve or anything that could be treated by a chiropractor or physical therapist? • Psychiatrist – I would be very shocked if the cause of this headache was based in psychiatry, but her life was changing rapidly at the onset (starting high school, new soccer team, etc). Would it be worth trying to see a psychiatrist to assess the headache problem from that angle? If nothing else she will soon probably need therapy to deal with her grief and depression that is a result of the headache. • Are there any other doctors or tests that I’m not thinking of? Anything, even if it is a long shot? Could it by a dehydration/water absorbing issue? Could it be some other issue with how she absorbs essential minerals? Could a nutritionist help? Could it be a sleep issue? Could it be related to weather or barometric pressure? I’ve started trying to track this, but it’s difficult to see a pattern when the headache never goes away. How can we test for everything and figure out the cause? • Is there anything safe that we can try that might be an extreme long shot? For example, she has not had a good night’s sleep in nearly a month. Could this just be a cycle she needs to break out of? Would there be any benefit to giving her a sleeping pill for a few nights to try to restore her sleep/wake cycle? What are the risks of any approach that we might try? Second Opinions: Is there anything we have eliminated from the list of causes that we should revisit? I’ve mentioned looking at DVA as a cause again. What about the TMJ issue? Does the oral surgeon’s high level assessment hold up? Should we take a deeper dive into that as a possible cause? Out of Town Specialists: We have hit the point we are willing to travel anywhere to see the right specialist or expert in this particular condition? Is there a clinic that specializes in headaches? It is hard to get access to specialists in Chattanooga. Do specialists have more availability at Vanderbilt (Nashville) or Emory (Atlanta)? Do either of these hospitals have some kind department or group that is better equipped than a typical pediatric neurology department to deal with solving this? Is there somewhere else we should look at? Cleveland Clinic? Mayo Clinic? How do you go about being seen by these types of specialists? Homeopathic: We’ve tried ice bags, heating pads, herbal teas, peppermint oil rubs, hot baths, scalp massages, and lots of long shot things that were harmless if they didn’t work. They didn’t work. Is there anything else? Is there anything that may even just have a temporary placebo like effect to give her a few minutes of pain free existence? We are desperate.