Chiari Malformation Community
have you heard of Topamax?
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have you heard of Topamax?

Two days ago I went to my first NL appt and he wasnt very nice IDK if it was he was being sarcastic a jerk or if that was just his tone of voice due to his accent. He took one look at my MRI's and couldnt figure out what a spot in the middle of what seemed to be my spinal cord was he keept asking "what is this? what is this?" then he would change the view and ask "what is this?"..... sent me to get a brain MIR and an other C-spine and some blood work I AM FREAKING OUT!

He gave me Topamax to try and control my neck spasms he changed my pain killers for my migraines and he asked "why didnt you go back to the NS?" i told him he wanted to see me for surgery but i was trying to see if I can avoid it and your know get it check further. He followed by saying "why you dont go, if he said to go back YOU GO BACK!" made me feel as if i was doing wrong by seeking his opinion on what i have.

I AM FREAKING OUT!!!!!! IDK KNOW WHAT TO DO????
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Topamax was the first med I was given after dx with Chiari.  It was supposed to help the headaches.  It didn't help me.  

Is your NL a Chiari specialist?  If not, he probably won't attribute your headaches to chiari...mine didn't and I quickly replaced him with docs who are educated in that area of specialty.  

Give the med a try...hey, you never know.  I do know that for that med it may take a few weeks to come up into the "therapeutic window" in the bloodstream.  :)
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1925822_tn?1333709217
Ok...the question if he is a jerk is battled by the question if he knows his job???!!!go and try to get another one.i wouldnt accept medication from an nl who is not able to read mrts!!!
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Tjay, topamax did not work for me either.  None of the headache drugs did.  Was your original doctor a doctor who knows a lot about Chiari?  If so, you should go back to him.  If you want a second opinion regarding his Chiari doctor, find another Chiari doctor.  Don't go to just any regular neuro doc because most of them know nothing about Chiari.
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620923_tn?1416285879

  Hi....I am on Topamax post op and it is a help to me now, I was never on it prior to my surgery..,.and it is a med that takes a good 2 weeks to adjust to...and I really did not think it was helping until I ran out....it helps.

And I have to agree with actressmouse questioning ur NL if he/she is a chiari specialist or is well experienced...same with the NS u were sent to.....u have a right to get more info and not to be pushed into major surgery with out more tests and a reason y u need it.

   Can u travel with ur ins? DO u need a referral?
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i have NO IDEA lol the ns i searched for a chiari specialist in my city but nothing popped up and the i figured i would go get the MRI's and the blood work and to the next appt and see if i want to stay with him he seemed to know about chiari not too sure on being a specialist he was asking me about my headaches and spasms and i kept telling them they were two diferent pains he checked my balance and my sensitivity since i told him my right side gets numb a lot I DONT KNOW what i am going to do if i dont find a chiari specialist here i cant really afford to go out of town my husband and i are thinking on moving to San Antonio or Dallas but we are not really sure yet I AM SO NEW TO ALL OF THIS AND I GET STRESSED REALLY EASILY WHICH IS NOT GOOD AT ALL =/
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620923_tn?1416285879

  Well do look at ur  ins to see what they will pay for, u deff do not want to settle with local drs bcuz they r close at hand, u want a true specialist....there r so many variables with this surgery and u want a well experienced dr.

  There are some none profits orgs that will fly u to Dr appointments.....

  Do look at the list of Drs we have  listed, but keep in mind the list is not a referral, just a means to help u get started researching drs.
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1546631_tn?1321646804
I was put on Topamax in the beginning, but I had the side effects of feeling "stupid". My NL was great and changed it to zonisamide. Unfortunately, it still goes through phases of not working :-( And it definitely sounds like your Dr wasn't very nice....I hope you find a better one..
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1063386_tn?1287882169
I was put on topamax awhile ago and it nothing but make things worse.  Then after my shunt was put on it again and now it is a life saver to me of course on the right dose.      Side effects can be a killer and I had to dramatically alter my diet to eliminate them ( no MSG, no oils, no preservatives).  That seemed to fix most of them and if I slip up and eat something with that I canninstantly tell and have them back.    But adjusted diet worth the effects of the meds for me.   But it took months of playing with the dosage and times of the day to get it just right.   Like I can't take it 12 hours apart.  I take it first thing in the morning an then at lunch.    So. Everyone is different.   You may need to see what works for you. But don't give up until you have played around with it and if it sill doesn't work then it might not be for you.    (I will shut up now. Lol.  Sorry.  ; ).   )
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1063386_tn?1287882169
Oh shoot.  I didn't mean on your own.  I meant with a doctors guidance.     And maybe you will need this doctor to do that for you for now until you can find one that is a speacialist.     Good luck.  
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