I'm scared and don't know what to do!!

[jaceyhubb5]

I'm 22 and have had headaches everyday for last 4 years. I went to the doctor and she just gave me your normal ibuprofen and order a MRI. So two weeks later I went and had my MRI. Never got a call saying anything bad so I didn't worry. Months went by I moved up to a big city and saw a new doctor. He sent me a referral to a neurologist. The neurologist had me do a cat scan and MRI. Plus he put me on topamax, prozac, and gabapent

I can't live without my those three meds.  But I can tell in the last few months they have not been helping. I been seeing my doctor and she sent me to have a MRI. Well Friday morning I got the call.... they found chiari.

I rushed homed and looked it up, how could I not see this? I have ever symptoms. I'm so scared idk what to do. On top of that now I'm starting to lose my hair. Is that normal with chiar??

[Mel5056]

Hi there,  you are not alone as selma said.  I, too, am newly diagnosed just a few weeks ago.  I am waiting to see neurologist for more answers so i know how scared you are.   All i can say is one day at a time.  Find the right dictor to help you thru this journey that specializes in chiari.   From everything i am finding out a lot of docs dont understand this and dont  like to entertain the idea of it.  I know its stressful which doesnt help the symptoms either.  But get the right doc and get the facts you need to make the best decisions you can for yourself.  You are your best advocate and hopefully as you move thru this process you will be a lot stronger physically and emotionaly.  God bless!

[selmaS]

  Hi and welcome to the Chiari forum.

Chiari is one of the most overlooked DX even when it is as obvious as an elephant in a living room...too many Drs are not well informed or experienced with it so u need to locate a true Chiari specialist...have more testing to see what all is going on with u ...just having a Chiari DX is not enuff.

Those of us with Chiari are prone to auto immune conditions and connective tissue disorders....

One auto immune conditions many of us have is Hashimoto's thyroiditis...which can have and effect on ur hair.... most Drs do not look for an auto immune thyroid issues they only look at TSH which can appeaar normal while an issues is still affecting u....

Chiari symptoms do not respond well to meds....if nething if they do it is short lived.

It is also best not to build a tolerance to meds now, bcuz should u need surgery later u will not have a med that will help with surgical pain.

There are things u can do to help with the HA's and other symptoms u may have....check out the Health Pages for a list of activities to avoid as well as a List of Drs for u to use to research Drs..as the list is not a referral, nor an endorsement.  http://www.medhelp.org/health_pages/list?cid=186

Try to relax, take a deep breath and remember to exhale...
Know u r not alone <3