Chiari Malformation Community
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This patient support community is for discussions relating to Chiari Malformation and Living with Chiari Malformation.

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New to Chiari

Hi all,
I am new to this forum, mostly trying to see if anyone else is having any of the same issues and express some of my frustrations.
I have been having headaches for a little over a year that started out lasting only a few seconds of intense pressure with straining activity but that developed into chronic daily pressure headaches that never truly go away and can be very debilitating some days. Originally my MD told me I have Pseudotumor cerebri, however, that did not really fit with a lot of my testing. My MRI did show a chiari malformation of 5.5mm, so now they believe that may be the problem. ( I also has blurred vision, and have developed very poor balance-frequently walking into things) I now take the maximum daily dose of Diamox, which reduces the pressure, but the effects do not last long,, and it only dulls the pain, does not get rid of it. Has anyone else tried Diamox for Chiari?
I have no syrinx associated with the Chiari and my MRI described it as 'stable' I am 26, but I still feel so limited with basic daily activities, and I have had to slow down a lot, and even miss a few days from work when the symptoms are so bad I cant even think straight,
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620923_tn?1416285879

  Hi and welcome to the Chiari forum,.

First DIAMOX is a diuretic....it is used to help get rid of excess CSF that is either being over produced or not being absorbed into the body correctly.

To say u have no syrinx, means u had a MRI of the brain. cervical spine, thoracic and lumbar spine....if u only had the brain and cervical spine done, u could still have a syrinx in the thoracic or lumbar area...too many Drs only look to the cervical as it is a common place for them, but it is  not the only place they can form.

Ur best bet is to locate a well informed Dr that is also well experienced, a true Chiari specialist. We have a list for u to use to research Drs, but it is not meant as a referral and it does not mean all on the list are true specialists either, this list is compiled by the members of Drs they went to and liked....U have to visit a few and choose the right one for u.

As for people that feel like u....unfortunately there are many....sorry u had to seek us out but we r glad to welcome u : )
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I have tried many different medications over the course of 20 years.  Have not ever been given Diamox.  My doctor wants me to try Amitriptyline now.  So many of the previous meds I have tried have done to me what you are saying.  Kind of dulls the pain but but the pain is still there, if you know what I mean with all of the same other related problems.  I was wondering if anyone had any experience with Amitriptyline?  During my course of work I finally had to get a Job & Family Leave Act paper completed by my employer because they didn't want to have to fire me for times when I was sick over/above their allowance so with that paperwork completed and on file they had to provide me with some special consideration.
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Avatar_m_tn
I have tried Amitriptyline as well and that really did not have any effect except it helped me sleep through the night because of its sedating side effects
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I was started on Amitriptyline one week ago.  I have tried Gabapentin (just made me fatter).  When the Neuro prescribed it to me he said to NOT take my Ambien anymore as the Amiotriptyline would "sedate me to sleep"...and that I could start trying to ween off of kmy zoloft as well as the Amitriptyline would also cover my depression and anxiety.  So yah-sounds great right?! One pill to cover it all!?!?!  Nope...it doesnt even come close to sedating me-i miss my Ambien and most of all....SLEEP!  He also prescribed Valium to help my muscles relax and cover some of the pain up.  My effects from the Amitriptyline are not the magic pill I had hoped it would be.  It has caused me to be more depressed, always wanting sweets, and does not help me fall asleep.  It does take some of the edge off the pain-but that could also be the valium that I take with it at night only?  I have dx of Chiari Malformation with Syringomyelia of the cervical and thorasic spine, and probable EDS.
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