Chiari Malformation - Online Support Group

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Worst panic attack of my life

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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Permalink Reply by katandbear on February 5, 2012 at 12:39pm

I am sorry you had to expierence that. Panic attacks are very scary! You are absolutley right about the doctos needing to just say that you are going to be fine and to breath. It truley feels like you are going to die during the attack. At least, you knew enough to focus on your breathing. I've had panic attacks for the past 6 yrs. I've been told mine are very sever. I take daily meds for my anxiety and also have xanax to take during an attack. I have taken Adivan in the past and it does help during the attack. Xanax is addicting, so its best to only use when you feel the anxiety starting.

How are you feeling today? My Chiari kicks in over drive after i calm down from the attack. For 2-3 days, I am usually in bed unable to barley move or open my eyes. Then the neck and head pain, along with my overall symptoms linger for about 1-2 weeks. With a day here or there, that I feel ok, actually a few hours here or there...lol. I truley hope you are not going through the aftermath, like I do. I don't wish that on anybody!

Please take care of yourself. Try to relax and rest, stress is not good for our bodies. Just remember to breath :-)

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Permalink Reply by Bill Zern on February 5, 2012 at 12:57pm

Thanks kat. Today I just feel like I'm on the verge of another one but definitely not as bad. I preemptively took my xanax today. I also talked to Dr. B a minute ago and he told me that I have wear a holter monitor again so when I have panic attacks, they will be able to see if the tachycardia is before the actual anxiety attack. Why can't someone just freakin fix me already. I don't know what to do anymore.

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Permalink Reply by mommy.of.two.5483 on February 5, 2012 at 8:03pm

I suffer from Generalized Anxiety Disorder and with that I have had panic attacks. They suck! I am going in to see my doc again this Thursday to see what kind of meds they are going to put me on this time...hopefully something that WORKS. I hope you are feeling better now and you get the answers you need soon.

Crystal

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Permalink Reply by Renee on February 6, 2012 at 6:00pm

Bill, i am so sorry this is really rough. Did Dr B suggest you go see Dr Claire DeFrancomaro, she is the
Head genetics specialist at the Harvey Genetic Institute, Baltimore,MD.? She test for other genetic
Disorders that have been seen with Chiari patients. I know when you have a disorder , you tend to see
Everyone with similiar symptoms as you ,as having the same condition.
But, with that said, as i have said, i have Elhers Danlos with my Chiari. Of EDS's many symptoms, one
Is ,( forgive my spelling) costochondritis, Basically, arthritis in your rib cage. This results in : severe pain,
Constricture of your lungs( causing it hard to catch your breath- thus - painic attack, back shoulder
spasms, & at times pain that feels like a heart attach. These are kept under control with : pain pills,
Lyrica, biofeedback, & yoga breathing. It sounds over whilming but once we have tools , we can
deal with anything. At least your with a Great doc & he has more experience than anyone we
have found. I hope this helps a little. Oh yea, have you tried Elavil + Ambian = sleep.
Renee

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Permalink Reply by Bill Zern on February 6, 2012 at 7:59pm

Thanks everybody, I just breathed myself out of another one. I guess my question really is... Is there ever a point where a person may need emergency decompression surgery or something like that?

My psychiatrist said I can up my dose of Xanax by a lot because I wasn't taking that much to begin with, so hopefully that will help.

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ModeratorPermalink Reply by lori on February 7, 2012 at 7:12am

hi Bill,

Oh, How i can relate to you!!!

For me, anyway....I see a therapist..which is very helpful....one must find the right therapist..you have to 'click', ya know?? otherwise..IMHO..it is just a waste....

I don't know if i have ever mentioned this on this site...anyway....I was Dx'd yrs ago with adult ADD...I take meds for that...well..after my mom died 2 mths ago..even b4 that , i think....i started getting severe anxiety..so, i took it upon myself to play dr. and abruptly stopped the ADD med..thhinking it was making the anxiety worse...long story short...it did the opposite....my anxiety turned into panic attacks..where i wouldn't leave mt house unless i had to.

saw dr. ....went back on ADD med..he also gave me Klonipin 1mg x3 daily if needed.....the klonipin helps....without knocking me out.

I am just wondering if your doctor ever tested you for ADD??? B/c, in my case....my mind was all over the place...and it does make sense that if left untreated..one would get very anxious....just a thought??

How are you doing today?????

Peace,

Lori

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Permalink Reply by Bill Zern on February 7, 2012 at 10:24am

thanks Lori, I'm so sorry about your mother<3

I do see a psychiatrist (have been for the past 6 years) and I do have ADD even though I think it doesn't really exist. Either way, I find Adderall to fix most of my problems with depression, chronic-fatigue, and concentration. My life is pretty sad without it really. I will definitely mention Klonipin when I see her tomorrow. Xanax works great at night but it totally knocks me out during the day. Thanks for your help :)

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ModeratorPermalink Reply by lori on February 7, 2012 at 1:11pm

Bill...

How are you feeling today????

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Permalink Reply by Renee on February 7, 2012 at 2:13pm

Bill, hope you got a good nights sleep.
Is everyone on Adderall for ADD? I'm on Concerta, because
Adderall has some nasty side effects (mainly something called- aggitated depression), 2 of my kiddos were diagnosed with that after being on Adderall for @ 3 yrs for ADD. With in 1 wk off of Adderall, they had no signs of depression, so Concerta was traded out & worked. But dont ever go cold turkey off either drug can it can result in seizures. Of course everyone has diff. Chemistry, it may just be a bad drug for my pack.

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Permalink Reply by Bill Zern on February 7, 2012 at 7:32pm

I'm feeling much better today :)

I've upped my Xanax and I will be seeing my psychiatrist tomorrow. I should be receiving a call soon about insurance so that I can finally schedule surgery. Worst case is that I'll have to wait until June for my medicare to start. Of course by then I'll be 30 years old. If i were able to get it sooner I could be well into recovery before my 30th birthday in May and that would make me very happy :)

Renee,

You are correct about everybody reacting differently to those medications. They all work for me but Adderall is the most consistent and my personal favorite. I was taking Concerta for a while but it did not help my depression enough. I have tried so many different anti-depression meds for weeks and months at a time with no luck so Adderall is like a miracle for me. Concerta is really just time-release Ritalin. If you find that Amphetamines work better for you or your children, there are a many different variations... One of them being Dextroamphetamine. I seriously can't even get out of bed without Adderall so I would never go cold turkey. I have been aware for a while that this is sort of a red flag.

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Permalink Reply by Renee on February 7, 2012 at 10:48pm

I hope everything goes well at the doc. Tomorrow. I'll keep my fingers crossed ,that your insurance responds quickly. Its great that you do so much research , we have to be our own advocates.
You will love 30, its a very good age. Hope you have a low pain night.
Renee

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Permalink Reply by Susan on February 7, 2012 at 11:21pm

I'm sorry to hear about your panic attack, how are you feeling today? I hope your insurance responds quickly. I was just wondering when you did go to the er did they do a ekg or a ct scan? Did the er doctor call TCI and check with them? I know how frustrating it can be at the er when it seems like people are not listing to you.

Susan