updating again

[xxMusicSaviorxx]

well i recently went to a nerogical appoint. yesterday. she examend me on my walk,coordination and balence and she said that all my symptoms are somthing else. I believe it is possible but not in this case where everthin is pointin their fingers at chiari. And right now the surgery has been canceled for now because the nurse gave me this pain preventer called nortriptyline to try.  I took it last night as she directed but right the pain hasn't decrease. I know that i have to give it time but truth is I dont know how long i can go on like this. I wish that the pain would just go away cuz i swear that i just wanna sleep forever so i dont have to feel any more pain.....

[pamk5]

This disease is so hard to handle, I know.  You have to keep in mind that there is help and you will get there.  I also had a reaction to Nortriptyline and it wasnt pleasant, I am so sorry you had that on top of everything else.  It is good to know that you wouldnt hurt yourself.  Depression can be a powerful illness too and since you cant take the other meds maybe ask for something else to help.  Being depressed is nothing to be ashamed of, we are dealing with alot.  As far as the headaches go they can be unrelenting.  What the NS told me once was that when your pain gets to a 10/10 nothing by mouth is going to help.  Maybe have your ma take you to the ER to get some injections to break the cycle of pain.  Maybe if you can stop it for awhile you can at least catch your breath and have a break.  It could last for a couple days.  My doc put me on beta blockers for my bp dropping but it seems to be helping the frequency/intensity of the headaches too.  Another thing that may help.  Try to hang in there.  You will get some help it just seems to take awhile.  

Having another MRI cant hurt.  Are they also doing a flow study or Cine MRI?  I would ask for one to see how much blockage if any you may have.  

Pam

[actressmouse]

Are you in high school?  If so, KEEP TALKING to your school social worker....Have you told HER (or him) about your feelings of hurting yourself???  THIS IS SERIOUS STUFF.  You NEED tell someone what's going on....no one can help if you don't.  And BTW, going to a psychologist is not the end of the world.  There's no shame in needing help sometimes.  We all do.  After all, you're going to other doctors, aren't you??  You wouldn't go see a foot doctor for a toothache.....talk to the psychologist/social worker.  They specialize in mental health issues.  Keep talking....

[xxMusicSaviorxx]

I found out from my ma that that same doctor that prescribed me the nortrypline ordered yet ANOTHER MRI. just another chance to play the long, painful waiting game. She said she wanted to look at my head without the braces becuase of interfirene of the metal. GR!! This is driving me off the edge right now, im grades are low because i dont have enought strenght to try anymore.

And i havent mention this to anyone yert but lately i have been imagening myself being hurt. Im daydreaming of bashing my head on the table or hittin myself with something hard to get rid of the pain. But like i said Im ONLY daydreaming, there is no way in hell i would actualy hurt myself. i would like to share with my ma but i already know where she will send me to...the phycoligost (sory cant spell good) thinkin like Im crazy. And that would be wasting even more useless time. I swear i dont know what to do anymore......

[selmaS]

  I know it is hard to change, but knowing holding in how u feel makes u feel worse....and u may not have the support system at home, but u do have it here.....talk to us, or write in a journal......but get our ur frustrations some how.

"selma"

[xxMusicSaviorxx]

To pamk5:

I too have been dealing w/ the pain since august. I do talk to a school counsuler at my school but it brings me even more down. I also had an alergic reaction so my ma told me to stop, plus the medicine just made me more depressed.

To everyone:

I try to talk ot someone but it doesnt help at all. They all say postive thing but my mind wont absorb any of it. I am right at the edge and no one knows or doesnt take me seriously. I want to give up the fight but an unknown reason is making me fight. So much stress is just implanted on my shoulders. Court, School work, stepfather(grr), no close friends, Stress-out mother and father. All of this had taught me to say silent, to hold it all in. Now i know it is bad for the soul to hold in emotions or anything but how do you if that was how you were raised and live?........

[actressmouse]

I was on Nortriptyline also....for a while.  The brand name is Pamelor and, yes, it's an old school antidepressant.  It does take between 4 to 6 weeks to build up in your system and reach that "therapeutic window".  I did not get relief from this particular drug...but it did tack on 5 - 10 pounds in weight gain. (Ugh!!)  Unfortunately, you have to go to a NL that is well versed on Chiari and all the symptoms it can manifest.  My NL has told me that some people are helped with meds and some are not.  He's very conservative, but reminds me all the time that we are attempting to medicate a mechanical problem.  Talking to someone (a social worker, psychologist) will definately help you put things in perspective....even if it's just to vent, rant, etc.  Treat the depression....that, too, can be dangerous.  Sending positive thoughts your way.....;)

[selmaS]

  I know the pain is not easy to deal with, but to say u want to sleep forever is not going to help u either...please let ur mom and drs know how u feel in this regard.....and please, keep the lines of communication open.

"selma"

[pamk5]

Hello,  this sounds like what most of us go thru.  So I am assuming this doc was not a chiari specialist as most docs refuse to admit that chiari can be symptomatic.   As far as Nortriptylline goes I had taken it for awhile and it is something that has to build up in your system.  I had an allergic reaction to it so I cant tell you whether or not it will help eventually.  I really think you need to get to a Chiari specialist that is the only way these symptoms are going to be validated.  

I know how hard it is to stay positive.  I have been dealing with this since last August.  You have to keep fighting and not give up.  Talk to someone about how depressed you are about this.  Is there a counselor at school you can talk to?  Nortriptylline is one of the old antidepressants so it may help your mood some as an added bonus.  Stay strong and hang in there.  

Pam