long lasting help?

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MC89449
New Member


Date Joined Jun 2009
Total Posts : 2
   Posted 6/7/2009 11:43 PM (GMT -6)   
im 16 years old and i have had extremely bad head aches for about 2 years.
i have been to my doctor and various neurologist and even eye doctors and no one knows whats wrong
i have gotten MRI and blood tests and have tested negative for anemia, lyme disease.. they cant find anything wrong but i know their is something wrong. it has come to the point where they think im lying about it or that its depression. Which neither of those are correct.
i have been in the hospital taken over 6 different kinds of medications for migranes and things. i have stopped eating MSG ive tried everythign and nothing helps. i can barley go out with my friends with out being extremely fatigued and tired or having to go home because i always have a head ache. my head aches feel like someone is stabbing a knife in my head and i normally try to sleep becaue thats the only time i cant feel it but i wake up with it also.
if anyone knows anything that it could be or even just MIGHT be please let me know.
its really hard to live a normal life when i cant even do anything.
Some other symptoms i have are weakness, muscle aches, sometimes belly pain,dizziness,and  i have had a level 3 concussion but it was about a year ago. and i also had mono about a year ago.
 
Thanks :)

januk
New Member


Date Joined Oct 2005
Total Posts : 9
   Posted 6/8/2009 6:04 AM (GMT -6)   
Hi there, I am sorry you are going through all this. I know how hard it is when no doctor can find the cause. Not that I want to be ill, but I have been secretly hoping some test would show something so this terrible and unrelenting pain could be finally addressed.

Anyhow, what I was thinking about when I read your post was: Have you asked your doctor about fibromyalgia? Because that is a disease where all the tests are negative too. Just a thought.

I hope you will find answers soon.

DadofPainboy
Regular Member


Date Joined May 2009
Total Posts : 45
   Posted 6/8/2009 8:23 AM (GMT -6)   
I have a son whose life sounds almost exactly like yours. Be sure you explain to your friends that if you don't show up to events they invite you to, it isn't because you don't like them. Make the effort to call and keep up communications with them. They will not understand unless you help them understand, and they won't know really what to do or will be afraid of doing the wrong thing.

Besides going to Neurologists, owing to the concussion, you should really see an ENT doc or oral-facial pain dentist. Lots of problems that look like migraine can be due to nerve compressions around the area where the jaw connects to the head, and also many can be due to dislocations you can't see behind the nose they can see. CT's and MRI's of that area are notorious for not showing these, but it is pretty easy to just look up the nose. The evaluations are not long, not expensive, not painful and if they turn out to be positive a real help.

korbnep
Regular Member


Date Joined May 2007
Total Posts : 327
   Posted 6/8/2009 8:25 AM (GMT -6)   
Also, there's just not always a "neat" diagnosis for every disorder. I have "new daily persistent headache", meaning that I started having a bad headache many years ago and it never stopped. I've had extensive testing over more than six years and nothing has shown up but we're confident in this diagnosis--my neurologists, psychologists, psychiatrists, GP, etc. Personally, I know that i can't definitively rule out the notion that there is a psychosomatic aspect to this, meaning a mental causes as opposed to physical trauma. But even if there is it doesn't make the disorder any less real or painful. I've been seeing mental heath professionals since I started getting these headaches and things have only gotten worse.

Psychosomatic or not, your problems are real and they're very difficult--don't let anyone tell you differently. As januk said, fibro is a possibility, though I'd expect hat you'd be complaining of more severe full body pain and potentially experiencing bipolar -like symptoms. Regardless, keep trying to find something that will help you--I guarantee that you'll eventually find it. In six and a half years I haven't found anything that gets rid of my headaches but I have a pretty good idea of how to make them as tolerable as I can.

One more quick idea. There are additional tests you may want to consider. For example, though you've gotten MRIs, MRA/MRV tests reveal potential blood vessel problems. A lumbar puncture may be in order depending on your symptoms (this has a lot to do with associated secondary symptoms such as aura)--your neurologist should be able to determine whether it's worth looking into. Also, sleep is often a problem for those of us with headache problems. A polysomnogram, or sleep study, could reveal some potential problems. Also, try anything you can to take some control of your headaches--biofeedback training, types of exercise that you can tolerate, along with many other strategies.

G'luck,
Ben
DX: NDPH, Recovered CRPS
RX: Lamictal, Concerta (Methylphenidate), Clonazepam, Wellbutrin XL, Namenda, Oxycontin, Oxycodone, Melatonin, Magnesium supplements.
PRN: Ketamine nasal spray, Celebrex, Migranal, Haloperidol, Zyprexa, Lodine, Zofran, Phenergan, Thorazine, DHE IM, Droperidol IM, Toradol, Reglan, Ambien CR, Provigil, and all triptans


korbnep
Regular Member


Date Joined May 2007
Total Posts : 327
   Posted 6/8/2009 8:32 AM (GMT -6)   
DadofPainboy said...
I have a son whose life sounds almost exactly like yours. Be sure you explain to your friends that if you don't show up to events they invite you to, it isn't because you don't like them. Make the effort to call and keep up communications with them. They will not understand unless you help them understand, and they won't know really what to do or will be afraid of doing the wrong thing.


Just to throw in my two cents: Dealing with friends when you feel rotten all of the time is very hard. It's definitely true that you should try to explain things to those close to you but I'm sure that you feel somewhat uncomfortable spending the limited time you have with your friends talking about how bad your life is (at least that's how it feels, even if you're just trying to promote understanding). The fact is that some of your friends will have a difficult time dealing with your problems. It sounds a little backwards but sometimes the people who care most for you have the hardest time seeing you in pain because they want to be able to help and feel powerless and conflicted not being able to. Also many people just don't know how to act toward someone who is in pain all of the time. Should they act normally or should they try to console you (and if so, how much?)? Bottom line is that you should keep in touch when you can and know that your good friends will be waiting for you when you're ready to reengage socially. Knowing that people care for you can be one of the strongest motivating factors in fighting to regain control of your life.
DX: NDPH, Recovered CRPS
RX: Lamictal, Concerta (Methylphenidate), Clonazepam, Wellbutrin XL, Namenda, Oxycontin, Oxycodone, Melatonin, Magnesium supplements.
PRN: Ketamine nasal spray, Celebrex, Migranal, Haloperidol, Zyprexa, Lodine, Zofran, Phenergan, Thorazine, DHE IM, Droperidol IM, Toradol, Reglan, Ambien CR, Provigil, and all triptans


MC89449
New Member


Date Joined Jun 2009
Total Posts : 2
   Posted 6/8/2009 10:09 AM (GMT -6)   
Thank you guys for all your help im going to talk to my parents about seeing all the different doctors and test's that you guys recommended but im not sure they will take me considering they have started not to believe me too. but thank you all again :)

tysmyboo
Veteran Member


Date Joined Dec 2004
Total Posts : 921
   Posted 6/8/2009 5:50 PM (GMT -6)   

MC-

Sometimes I find that parents dont know what to do and that can come off as them not caring OR making you feel like what you are feeling is NOT real.

Now that I am a mother I can understand how much you dont want your child(ren) to hurt. Try to talk to them about what is happening and do so when you are not in the most pain, sometimes I find that when I am in so much pain I am not speaking logically and others can't really grasp what is going on without my emotions getting in the way!

I'll be thinking about you. Let us know how you are doing!

((hugs))


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