Teen with Daily Chronic Headaches/Migraines- So frustrated!

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EmHann
New Member


Date Joined Feb 2012
Total Posts : 1
   Posted 2/15/2012 8:31 PM (GMT -6)   
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
New Member


Date Joined Feb 2012
Total Posts : 8
   Posted 2/16/2012 9:04 AM (GMT -6)   
Hi EmHann, I am new here as well! I am excited to reply to your post because I have had a similar experience as you except mine has been going on for 9 years. I came to this forum because I am equally frustrated with the lack of effective medical care and guidance for headache and migraine sufferers and I feel like what I have learned can really help people. I have the same diagnosis as you Chronic Daily Headache with Chronic Migraine. I feel your pain...literally. Mine is also the result of Traumatic Brain Injury. I spent 6 years in various doctor offices, expensive pain clinics and hospitals trying every kind of medication out here, even surgery. Nothing worked for very long if it worked at all. I was just progressively getting worse. And the side effects were horrible. I can't describe to you the horror of those years. I finally met a Chiropractor who was also a Cranio-Sacral Massage Therapist and registered Nutritionist who told me there was another way. For three years now I have been doing things her way and am finally experiencing real healing and relief. Now I was a real mess and that is why it is taking my body so long to heal. I think you could heal faster as you haven't yet destroyed yourself with meds the way I had. First, find a good chiropractor because you are right you are being mishandled by the neurologists. A headache or migraine experienced because of brain trauma is COMPLETELY DIFFERENT than the classic migraine they are attempting to treat you for. That is why none of the medications are working. I tapered off of ALL the prescriptions and feel MUCH better for it. Although the process of getting off of them is difficult I am so glad I did it. I have been getting bi-weekly chiropractic adjustments which are getting oxygen to my brain and allowing it to heal faster. I am taking Chinese Herbs and Nutritional Supplements as prescribed by my Chiropractor who has 25 years experience doing such and buys from reputable suppliers. I have changed in many ways becoming healthier both physically and mentally. Eating a diet that is organic and high in fruits and vegetables while staying away from known headache triggers. I learned how to meditate and have incorporated some yoga into my lifestyle. I spent some time in therapy learning how to better handle the stresses that life throws out. I have spent the last three years watching the intensity and frequency of the headaches and migraine reduce, reduce, reduce. I felt like a pain zombie for so many years and I feel such joy knowing that I am healing that I wanted to share my results with others. Your story touched me because it is so similar to mine. You can be well. I hope that this information is as powerful for you as it was for me. It takes time for the body to heal itself but that is true healing not just a masking of symptoms. There is real power in that. I will watch for a reply from you so please feel free to ask me any questions you may have. For now, find a good chiropractor and discuss the info I have given you with him or her. Take care of your body. Eat well, sleep well and drink plenty of water. And know that there is hope.

mercyme
Regular Member


Date Joined Feb 2005
Total Posts : 310
   Posted 2/17/2012 6:34 AM (GMT -6)   
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

33Hope4Healing
New Member


Date Joined Feb 2012
Total Posts : 8
   Posted 2/17/2012 10:37 AM (GMT -6)   
Wow, I am sorry to hear all that. I can only add that it took 5 months of seeing my chiropractor 3 times a week before i saw any change. Also, I find that being medication free and side effect free is better than dealing with drugs that barely work. And I don't think that the supplements or chiropractic care would have effected any difference had I not gotten free of the prescriptions. The meds were causing rebound pain. I am so sorry you have so much pain. I spent years with a daily migraine. Now I still have frequent, almost daily headache but the intensity and frequency continue to diminish. Good luck with your journey.... Blessings to you too

My Lovely
Regular Member


Date Joined Feb 2012
Total Posts : 54
   Posted 2/20/2012 4:27 AM (GMT -6)   
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
My lovely

metairieclark
New Member


Date Joined Feb 2012
Total Posts : 11
   Posted 2/20/2012 7:30 PM (GMT -6)   
it took almost two years now since my wreck , and at least the cluster or clusterlike headaches are kind of gone , permanently i hope , but you can expect some improvement over time ,,,,the daily migraines and daily headaches are going to be with you for a while ,, how long i do not yet know ,,,, gabapentin and fiorinol with codeine ,is what has kept me alive thus far ,, don t know how effective gabapentin is in preventing headaches , but it does well for nerve pains throughout the body and alleiviates alot of other neurologic stuff too most of the time 50-60% anyway ,, be carefull with the fiorocet or fiorinol with codeine if you can get a hold of some , you can medicate yourself into a headache that won t go away ,,, but you have to take it easy for a while , bout a year after wreck i had to start wearing earplugs because i was so sensitive to noise , but turns out it gave my ears enough rest to heal that part of my head ,,, the doctors haven t said it , but our brains are probably damaged , and it takes a long time for it to heal it would seem,,, just wish i was smart enough when the accident first happened to know that ,,, yes if you have that problem too , it will get better , i am still not 100% but i am better than i was

metairieclark
New Member


Date Joined Feb 2012
Total Posts : 11
   Posted 2/20/2012 7:40 PM (GMT -6)   
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
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