Chiari Malformation - Online Support Group

We are patients and survivors of Chiari (types I-IV), here for your support.

Personal Blogs

I noticed that a few of us have personal blogs on chiari (maybe more of us that I know.)
So I thought maybe we could put a section in the resources for personal blogs. If you'd like to submit yours post the link in this discussion.

http://chiari-life.blogspot.com

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Replies to This Discussion

ModeratorPermalink Reply by lori on January 16, 2012 at 12:57pm

Hi.....

You are always thinkin'!!!!!! Good idea......I am thinking of blogging but don't know where to begin!!!LOL

Peace,

Lori

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ModeratorPermalink Reply by Alicia Roden on January 16, 2012 at 4:13pm

lol :)
I think too much sometimes. So many ideas. You should see my desk and notebooks!

As for starting a blog...you should! Best place to start is telling your story or just talking about Chiari and what it is. Mine is a mix of information and personal experience. Basically anything I think or feel to write.

-Alicia.

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Permalink Reply by MistyB on January 17, 2012 at 5:37pm

I would love to share my personal blog with you all. Mine can be found here ------ http://daywithchiari.wordpress.com/

I welcome feedback, questions or whatever.

Thanks,

Misty

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ModeratorPermalink Reply by joelene hossack on January 18, 2012 at 2:33am

oh misty

you are fantasic writer, you put me to shame, lol

you should write for a magazine or newpaper, the way you express yourself is great,

joelene

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ModeratorPermalink Reply by Alicia Roden on January 19, 2012 at 6:47pm

Thanks Misty! I added yours to the resources tab:)

I know there are quite a few of you out there with blogs (I'm following you :p) Post them here if you're interested!

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Permalink Reply by Kajosmom on January 20, 2012 at 2:51pm

Lori, I was thinking the same thing!

lori said:

Hi.....

You are always thinkin'!!!!!! Good idea......I am thinking of blogging but don't know where to begin!!!LOL

Peace,

Lori

▶ Reply

ModeratorPermalink Reply by Twitch (Adam) on January 23, 2012 at 3:29pm

My website was originally started as a way for me to talk about my recent diagnosis of Tourette's Syndrome and PTSD. Doctors discovered a Chiari on my MRI in March of last year (I wrote about it briefly). With everything going on now, I'm starting to doubt that I even have TS or PTSD. I'm in the process of writing an ENORMOUS article about recent developments regarding my Chiari. With everything going on, I have a feeling that Chiari is going to be the direction the website is going to take for the time being.

www.thetwitchonline.com

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ModeratorPermalink Reply by Twitch (Adam) on January 23, 2012 at 3:35pm

I really enjoy reading your page. How long have you been taking Topamax for Chiari symptoms? I've been on 600mg a day for nearly three years for Tourette's issues. I found that for a short time after I pushed about the 300mg mark, I had some short term memory issues and word recognition problems, but those subsided within a couple of weeks. I've started having the same issues again lately, but I'm starting to think that it may be brain related. I haven't had an issue like this due to the medication for over two years. Without the Topamax, I'm a ticking mess.

MistyB said:

I would love to share my personal blog with you all. Mine can be found here ------ http://daywithchiari.wordpress.com/

I welcome feedback, questions or whatever.

Thanks,

Misty

▶ Reply

Permalink Reply by MistyB on January 23, 2012 at 4:09pm

Thank you so much for the complement. And honestly I would love writing professionally.

joelene hossack said:

oh misty

you are fantasic writer, you put me to shame, lol

you should write for a magazine or newpaper, the way you express yourself is great,

joelene

▶ Reply

Permalink Reply by MistyB on January 23, 2012 at 4:11pm

Oh gosh Ive been on it for so long now. Id say at least 2 years total. It has been like 3 yrs off and on though. Currently I am only on 100mg a day.

Twitch said:

I really enjoy reading your page. How long have you been taking Topamax for Chiari symptoms? I've been on 600mg a day for nearly three years for Tourette's issues. I found that for a short time after I pushed about the 300mg mark, I had some short term memory issues and word recognition problems, but those subsided within a couple of weeks. I've started having the same issues again lately, but I'm starting to think that it may be brain related. I haven't had an issue like this due to the medication for over two years. Without the Topamax, I'm a ticking mess.

MistyB said:

I would love to share my personal blog with you all. Mine can be found here ------ http://daywithchiari.wordpress.com/

I welcome feedback, questions or whatever.

Thanks,

Misty