Teen with Daily Chronic Headaches/Migraines- So frustrated!

Hi! I'm new here, and I'm just looking for some guidance I guess. I haven't ever talked about this, so I'm sorry in advanced if it's long winded.

I've been suffering from chronic daily headaches and migraines for the better part of 18 months, and my symptoms are just so confusing and the daily pain so..painful, I guess, that I'm becoming extremely frustrated. Before I get to my questions, here's the story:

In August 2010 I suffered a concussion playing field hockey. I was kept from playing because I was cognitively impaired and was in so much pain for six weeks. However, once I was considered cognitively cleared by my school's neurophysiologist I was able to get back to playing despite having chronic headaches and severe sensitivity to light every single day (I lied about my symptoms because I had already missed the entire season- seriously regretting that now).

From August 2010 until August 2011 I had daily headaches that were pretty bad. I don't like to call them migraines, because 1) I wasn't diagnosed then, and 2) I feel like the majority of people who suffer from those horrible things deal with a lot more pain than I tend to, but they still really messed me up in school, my social life, etc. Being in constant pain just sucked the life out of me. But for some ridiculous reason that I still don't fully understand, it took me an entire year to tell my parents (or anyone) about my symptoms. Once I did, they immediately took my to my pediatrician who immediately referred me to a really great pediatric neurologist. I saw her for the first time in October 2011- she talked with my mom and I for about two hours, ordered blood work, an MRI, EKG, and EEG, and prescribed amitriptyline and fioricet (to take the latter as need, but I never have). By the end of November, all of my tests had been completed (and came up clean) and she had called to finalize my diagnosis of Chronic Daily Headache with Migraine, most likely caused by the chemical make up in brain that was triggered by the concussion I had the year earlier (the cause wasn't really clear, but the diagnosis was set in stone.)

Here comes the real issues: I continued with the ami while I waited for my next appointment, but the side effects were too harsh. Ironically, the antidepressant made me extremely edgy, sad, weepy, and just very 'depressed.' However, very much like before, I didn't tell my parents...why, I don't know. The drug also wasn't working, which was probably a good thing given the side effects, so by the time my next appt rolled around I was switched to topamax. As of right now, I've been on topamax for about six weeks with overwhelming side effects- I've lost eight pounds (not a bad thing), have stomach pain when I eat and digestive problems because I don't eat, have crazy tingling in my limbs and on my face, etc. and no results! SO FRUSTRATING! It's like- why isn't this working? What's going to happen if it's not going to work? What else is there to try? I'm losing hope and that's making it even worse because I'm only at the very beginning of my journey with this.

The other thing that's really bothering me is my 'diagnosis.' I'm only sixteen, have only been dealing with this for 18+ months, and obviously don't know what I'm talking about, but I just don't feel like it fits. My headaches are very erratic and inconsistent in where they are and how intense they are...the only consistency is the pressure in and behind my eyes. It's absolutely incessant..hours a day every day that isn't relieved by anything, worse when I lay down, etc.. It literally feels like my eyes are being pushed and pulled out of their sockets. I'm also extremely sensitive to any form of light. Is this 'migraine'? Is it something else? I tried to bring this up to my substitute doctor (my normal one is on medial leave) and he shot me down, saying it is in fact just a migraine. But all day, every day? That just doesn't make sense to me. And then the inconsistency of the types of headaches I have; I hardly ever have to do the whole lay down in a dark, silent room thing because, while the pain is quite bad, it's just not that bad (though I probably could do it more than I do-- but if I got in the habit, I don't think I'd ever go to school!); I don't recall ever having a throbbing headache (it's typically just a really, really heavy pressure or occasional set of 'ice picks' at the top of my head); the pain can be anywhere on my head at anytime, but especially around my forehead or on the side but can literally be anywhere; the eye pain isn't relieved by ANYTHING and the headache is rarely relieved by anything...I don't know.

Maybe I'm just searching for an 'easy answer' or an 'easy fix' through a new diagnosis because I'm so frustrated with this not being resolved (I know I shouldn't expect it to be, but I can't help it)...I'm just so confused. Does this sound like a normal headache or migraine and that I just haven't found the right medication yet? Or could it be something else? Has anyone experienced anything like this or have any advice?

I am SO sorry this is so long...thank you for reading, though!

33hope4healing, sounds like you finally are on your way to healing! I have chronic migraines also. I had epilepsy brain surgery in 2002 and thank the good Lord it was a success! These migraines started getting worse and worse after the brain surgery until they are daily now. I don't take a lot of meds because there isn't much that really helps at all! I went to a chiropractor for a few weeks but he wanted me to come everyday and I thought that was way to much! I was driving 25 min each way and with the cost of gas now I can't afford that. I found a new chiropractor and she did a deep tissue massage on me, it was kinda of painful when she did the trigger points, it didn't help with the migraines but not sure how often I'd have to go to see a difference. I'm at my wits end!

I'm not sure I could handle anyone touching massaging my head because it is still tender from another surgery I had to have on my head after the brain surgery. Crainoplasty, to repair my skull from the first brain surgery that had left a huge indentation on my right temple and large on the right side of my head. It still hurts to touch them and sometimes to even comb my hair. I had that surgery done about 5 years ago.

I have tried to take more natural supplements, but haven't seen a difference. The neurologist has me on zonegran 100mg a day which is a low dose. I take lamictal 200 mg a day for seizure control and that too is a low dose. zanaflex when needed, but mostly only taken at night because it makes me tired. Toradol but only take 2-3 times a week. I really don't have anything to knock the migraine right out of me, It never seems to ever leave completely.

My strength comes from the Lord. There is no way I could get through what I've been through without God. My Faith keeps me going!

Blessings ~ Mercyme

emhann: I cant begin to tell you how much I really feel your pain! i am in the same situation as you, reading your messge there are so many factors that I can relate to. massive hugs to you I think when we get to a year+ of being like this the realisation hits us and i dont know about you, but its though to handle.
WE can beat this, we need to stay possitive.
Have a read of my story (from my lovely)
Good luck
x

ps fiorocet doesn t work , just like aspirin or anything else you can buy , try to get some fiorinol with codeine , that is the only thing that gave me any relief , the really bad headaches will eventually settle to one side of your head , or at least thats what mine did