Chiari Malformation - Online Support Group

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I really didn't know they could get as bad as it was last night. I had just taken a little bit of xanax, next thing I knew, I was pacing and unable to catch my breath. Eventually it went away and I was super relieved. Then it happened again, and again, annnd again. So I thought that in between the next one I would get myself to the ER. I don't recommend this. I had a couple miles to go before I got there and then ... another attack, I thought I was a goner and started losing the feeling in my arms and legs( like they were falling asleep -prickly too). They get me all hooked up and then I get worse. I had no idea it could go this far. My whole body was twitching and getting stiff, I don't know what my heart of was doing and now my face was tingling and my mouth puckered itself closed.  

Well it took a little while to get better but I did :) The "cure" for this was slow deep breathing for like almost an hour. They offered to shoot me up with Ativan while I was freaking out, or rather - threatened to give me a shot of Ativan, and I was like "are you kidding me, I will gladly take that."  

It was really difficult but eventually I was able to shut most things out and just focus on my breathing. Then I had to call my mom to pick me up.

About the ER: I would just like to say that I respect anyone that works in the ER. I'm sure they deal with so much crap every single day and their job is to save people's lives. So last night, I was treated like a child. No eye contact from anybody. I constantly had to ask, "what's happening to me" and "how am I doing."  What I needed was a doctor to look me right in the face and say "You're fine, but if you don't slow down your breathing, you're going to pass out. Breathe like this and all of this will slowly get better..." and then show me how to breath.
It was unbelievable how long it took for me to learn that.
And also, since I was freaking, and there were no other patients, I asked him to double check with TCI to make sure this wasn't a complication of my condition. He refused. I asked him if he was familiar with my condition. he said "yes , this isn't your Budd-Chiari, don't worry about it." And I loudly said "Arnold Chiari Malformation. not Budd, Arnold."  I say, "I know that you are a doctor, but you are not a specialist, Can you please just call them?" and he replies, " they aren't open on Sat. night, nobody's there" and I said "I assure you there is so please call, people have died from this. Would it hurt to call???" ... then the doc just stopped talking to me. This was all while my mouth was barely able to open.

I'm going to make a printout of my condition with some MRI stills so I don't have to battle irrational idiots again, but I really hope I don't end up in the ER anymore.


QUESTION 1: Is this (panic) a chiari symptom/ should I call TCI ?  (I have Chiari 1, retroflexed odontoid, basilar impression)

QUESTION 2: Should I take something like Ativan on a regular basis?

QUESTION 3: Given my case, are there any possible emergency situations that could arise?

Thanks for your help<3<3<3

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I had my surgery in May and have had nothing but mental health issues since plus my symptoms are still here but the paralisis is gone. You know.... I've come to try and just live for the moment. With everything we are forced to deal with there really isn't room for anything else. So that would be my sugestion to you. Try to live for the moment. I actually ended up in a physc ward over thinking and panic, panic, panic and depression. The meds made it worse for me. In fact, they were pivart of the problem. Adava was one of those.....sorry adivan. Turns out to take a nar,otic for pain or controlled substance for anxiety was adding to my problems. I didn't want to become dependant on anything and it seems all they would do is keep upping the dose. Made me crazy. Now I take 20mg of prozac. Its light, non addictive and not an altering drug. Doing better now. One moment at a time. Even as a busy mom.

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