Thursday, June 20, 2013

16 year old with untreatable headache

By mamakib Wednesday, June 13, 2012

My son is 16 and is in his 10th month of a migraine level headache that never goes away, which has not responded to any medications.  This is his second bout as in 2010 same time of year he got a headache that lasted about 7 months that just stopped one day.  This session has been much worse. He even spent 5 days in the hospital.  He can't go outside because the light hurts his eyes.  Loud noises can complicate the headaches as can frustration.  Kaiser has refered him to biofeedback for pain management although last year his experience with the biofeedback instructor was not the best, mostly because he didn't like how she worked, not nessicarily anything she did.We have Kaiser for our medical plan and the neurologist last year diagnosed it as new persistant daily headache and this year as chronic daily headache.  We have tried many and none provided any relief except heavy duty narcotics.  Once they wore off of course the pain was back.  He has basically missed two years of high school and now is in a work at your own pace program which he does as he can.  We have started antidepressants as he has become severeley depressed due to the headache. He distracts himself from the pain by playing video games when he can, reading, watching TV.  Doing nothing makes him crazy because all he thinks about is the pain.  We are really at our wits end and the poor kid's life sucks.  I feel like crying half the time because I am sure there are things I should be doing but have no idea what or if I can afford them.  So thanks for listening.  It's heartening and saddening at the same time so read that there are other children out there living in similar situations. My heart goes out to any family suffering through this. 

Baffled by my migraines
6/15/12 9:13pm

Hello, and welcome to HealthCentral's Migraine Community!

 

I'm so sorry to hear that your son is having such a hard time right now. I'll give you some information on both new daily persistent headache and chronic daily headache. A friend of mine son has ndph and has had a very similar situation as your son's. He actually found relief from acupuncture, something you may want to look into.

 

Is it time to see a Migraine specialist rather than a neurologist? Here's the thing

neurologists may be fine doctors, but have a hard time being experts in one area. This is because they treat so many conditions like MS, epilepsy and stroke. A Migraine specialist is just that, an expert who treats one condition - ours - Migraines and headache disorders. When you get a chance, take a look at article Migraine and Headache Specialists - What's So Special? If you need help finding a Migraine specialist, check our listing of Patient Recommended Migraine and Headache Specialists. It’s important to note that neurologists aren’t necessarily Migraine and headache specialists.

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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. There are a few mom's who have children with ndph in the forum, so you may want to check it out.To get there, go to the Migraine home page and look on the left hand side where you'll see a row of boxes. The Forum box is at the very bottom. Click on it and scroll down to the bottom of that page, and you will see the log-in spot. 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 on the main page of our site, http://www.MyMigraineConnection.com. Under the Find, Manage, and Connect tabs on the left side each page, you’ll find a wealth of information – educational articles, tips, quizzes, workbooks, support and advocacy information, and more.

Do you have questions about Migraine? There are three ways to get answers – through our Ask the Clinician column, in our community Question and Answer Section, or through our forum.  Just go to our Migraine Answers page HERE

Our email newsletter will help you stay up-to-date on Migraine and headache news and new information published on HealthCentral's MigraineCommunity. To receive our newsletter, click the “Sign up now!” link in the navigation bar across the top of our site pages or simply click HERE.

Welcome again,

Nancy Bonk

Health Guide
HealthCentral's Migraine Community

PS: If you receive this message from more than one of us, please excuse the overlap. Thanks!

 

 

6/25/12 5:02pm

I also suffer from chronic migraines, I have Botox shots every 3 months, the insurance company pays for these shots, and they do help.  I cannot say that I am migraine free, but the intensity is not as severe.

Anonymous
Tiffany Bach
10/ 9/12 7:51pm

I also have suffered from this condition. I am 30 now and have been dealing with this for 15 years. I tried everything. For me the thing that has actually made a difference was psylicibin mushrooms. I was reluctant to take a haullucinagen but it has literally changed my life. I take them once a month and only have a headache maybe a few days out of the month. My migraine related seizures have almost completely stopped and I have given up three medications. I also stopped taking heavy painkillers that destroy your stomache and started vaporizing hash oil. i hope this info helps.

10/12/12 10:57am

Hi Tiffany,

 

I'm sorry you've been suffering so long. Do you have an accurate diagnosis? Some of us go around for years and years without a proper diagnosis. I was wondering from your pain relief methods if you have cluster headaches? There are THE most painful type of headache out there, often referred to as 'suicide' headaches. Let me give you some information on them, ok?

 

Cluster Headaches - The  Basics

 

Let me know what you think,

Nancy

6/22/12 11:58am

I, too, have suffered daily chronic migraines for years. I had chronic daily migraines following a car accident and almost 20 years later doctors determined it was TMJ. I had surgery to replace my torn ligaments and to put my TMJ discs back in place. I also had orthognathic surgery where my jaw was sawed through in 4 places and replaced with artificial bone. This did not get rid of all my migraines, but they were no longer debilitating and I could function until a woman made a left hand turn into our car in 2007 and two days later the migraines were again debilitating. During the past 3 months I am averaging 3 days per week migraine free. What a relief to even have only 3 days a week migraine free! I came across a web site:  www.msgmyth.com that has made such a difference. I did not know that some ingredients/foods when processed can turn to glutamate which is basically the same thing as monosodium glutamate (MSG) only without the salt. The effect on the body is the same. The nerves repeatedly fire. Have your son try the sample diet to see if he feels better and if he sees any improvement, I would encourage you to buy the book as it has some info that is not included on the web. I have no connection to either the web site or the book. I make no money from advising you to try this. I believe that the remainder of my migraines are being caused by medications I take as some of them are in gel caps and gelatin when processed changes to glutamate. Other fillers in my other meds may be the culprit also. I plan to talk to my neurologist about this at my next appointment. One other thing that has given me some relief are Botox injections. There is a new protocol using 31 injections. I am in my 3-6 month period and had seen a relief in the severity of the migraines. My neurologist says he is seeing a great improvement in his patients in the 9-12 month phase. I hope this helps.

6/26/12 10:26am
Thank you very much for all the info

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By mamakib— Last Modified: 10/12/12, First Published: 06/13/12