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Panic attack - worst one 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
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
Hi, i want you ti know your not alone nor crazy. I started havin panic attacks over 8 years ago and was in and out of er every few days. Nothng the dr gave me ever worked. I found out this jan from my nl that its autonomic dysfunction. And what exactly do we do about it? I have no idea, its not curable. It messes with heart rate, breathing, swallowin. And some times i feel like my heart id rollin over and i get all tingly tunnel vision, like im gonna pass out. Same feelings of panic attacks. But worse and frequent.
UGH! That is sickening! Being treated like a med seeker is so degrading! I know that feeling all too well! NO, I do NOT want the meds, I want to know what is HAPPENING to me! The arrogance of so many doctors is sick! I was told for 2 years that nothing was wrong with me. That I was faking it. Then I finally found out that I had CM1. I requested my medical records from the Hospital (including copies of MRI's, CT scans and Ultrasounds; they come with a report from the radiologist) Well, 2 years ago when my problems began, it was documented back in January 2010 that I have CM1. I was never told this, no one ever followed up on it.. I had given birth to my daughter in Nov of that year and it was difficult and I ran a high fever and it felt like I was dying... No wonder!
I agree, the next time you go to the ER, do take a cell phone.. I would call ahead to the NS at the TCI to let them know what hospital facility you are headed to, what you symptoms are and to see if the doc would be willing to speak to an ER doc if need be.
I agree, the next time you go to the ER, do take a cell phone.. I would call ahead to the NS at the TCI to let them know what hospital facility you are headed to, what you symptoms are and to see if the doc would be willing to speak to an ER doc if need be.
Okay, now I read the rest. I am sure I won't answer it right, as my mind is just not right these days. I have had panic attacks and I can assure you it is a symptom with chiari patients. Now I get bad tachycardia and then I either have a panic attack or I just lash out at people and say stuff I would never normally do at all. I get mean and I have always been a nice person. My heart rate has gotten so high that I get so dizzy and feel like I am ready to pass out but I am still functioning. When I told a doctor on-call once that it was fluctuating between 165-176, he said there was no way it was that high because I would not be talking to him. I told him it was and I was. He was just a reg doc, the heart doc said I can have it that high and still be well alert.
Anyway, panic attacks are very scary and I totally understand your concern and why you wanted him to call. He really should have. You should contact the hospital administrator about the situation (w/o giving your name if you want). They should have called because that was your doctor who was caring for your current condition. It is just so wrong of him to do that. I had an er doc who I told him to call a certain doctor and instead he called another who I no longer had and he came back treating me as a drug seeker and I had requested no meds! I told them I did not want any (have to wonder if they had me mixed up with another person who has the same last name and is a drug seeker). Anyway, he said there was nothing wrong with me. I was furious. I had to go back a few more times and one believed I was in pain and saw first hand the panic attack/high heart rate. Yet, they still did nothing.
I am not sure how they are at TCI, but I wonder if you had to go back to the ER if you could take a cell phone with you (I know they don't like them in the ER) but call from it on your way in or in if you need to) and have your neurosurgeon call the hospital ER there (give them the number & tell them bec they won't call him). So he can explain.
Anyway, panic attacks are very scary and I totally understand your concern and why you wanted him to call. He really should have. You should contact the hospital administrator about the situation (w/o giving your name if you want). They should have called because that was your doctor who was caring for your current condition. It is just so wrong of him to do that. I had an er doc who I told him to call a certain doctor and instead he called another who I no longer had and he came back treating me as a drug seeker and I had requested no meds! I told them I did not want any (have to wonder if they had me mixed up with another person who has the same last name and is a drug seeker). Anyway, he said there was nothing wrong with me. I was furious. I had to go back a few more times and one believed I was in pain and saw first hand the panic attack/high heart rate. Yet, they still did nothing.
I am not sure how they are at TCI, but I wonder if you had to go back to the ER if you could take a cell phone with you (I know they don't like them in the ER) but call from it on your way in or in if you need to) and have your neurosurgeon call the hospital ER there (give them the number & tell them bec they won't call him). So he can explain.
I have to comment on this, before I read the rest (before I forget to put this in)...OMG! I saw the word Budd-Chiari! Wow! I have been there! I told a story about one of my er visits awhile back (are you sure you don't live here in Ohio, ha ha) where I was told Budd-Chiari. They just don't know anything about this condition and if you correct them, they get upset and act like they know all about the condition...when in fact they don't. They probably google it real quick after you tell them and they only see the crappy stuff on it where it says it does not cause symptoms or problems, etc... you know the articles the "uneducated doctors" out there wrote. I have since heard that Budd Chiari from the hospitals 2 or 3 times. It is frustrating. I offered to send the hospital administrator information to share with the ER but they obviously don't want it. I emailed them links and everything.
In 2005 I had what they called a traumatic nervous breakdown. I woke up in the trauma unit with no clue as to what was going on. They thought I was on drugs and had overdosed because they couldnt find anything wrong. apparently when I went to bring my hubby to work(he was driving), he thought I fell asleep...we had a newborn at the time...and when he went to wake me up he said I was completley catatonic. I vaguely remember seeing his face but not being able to answer him, and that freaked me out more. They found out I was NOT on drugs but suggested that I see psychiatric help.(I did not need)
Then in 2011 I had what appeared to be 3 back to back seizxures without all the flailing of the limbs. Again I could not respond. Difference this time, I woke up two years in the past. I was hospitalized and poked and proded, and after all that all they found was CM1. My husband said that yes we knew about it(i didnt remember). The NL went as far as to tell my husband that I was just faking it, because the Chiari could NOT cause it. I was realeased and labeled as a pt with seizures. I want to tell you that IMHO yes it is very possiblt that Chiari is related to the panic attacks. Just try to talk with TCI or your pcp as to what type of med or routine will help slow the attacks. U say that u are on xanax already...that really should keep you from going into those type attacks. ~only my opinion though. Good luck to and sending waves for calm nerves.
Then in 2011 I had what appeared to be 3 back to back seizxures without all the flailing of the limbs. Again I could not respond. Difference this time, I woke up two years in the past. I was hospitalized and poked and proded, and after all that all they found was CM1. My husband said that yes we knew about it(i didnt remember). The NL went as far as to tell my husband that I was just faking it, because the Chiari could NOT cause it. I was realeased and labeled as a pt with seizures. I want to tell you that IMHO yes it is very possiblt that Chiari is related to the panic attacks. Just try to talk with TCI or your pcp as to what type of med or routine will help slow the attacks. U say that u are on xanax already...that really should keep you from going into those type attacks. ~only my opinion though. Good luck to and sending waves for calm nerves.
This is partly how my chiari symptoms presented. I'm wondering if pressure on the medulla can cause this?
Well if you ever find yourself feeling like that again... it's tuff but what they had me do was just take deep slow breaths for a long time. It's weird because you'll definitely notice it working but it's like you are going backwards through the panic attack. I just talked to my Psychiatrist and she said that in times like this I can up the dosage of Xanax up to 4mg in a day... Which is crazy because used to take 1mg at night and it would knock me out for 8 hours straight. I'm so sorry you had to go through all of that Zygy. And the way you described it was just right. This was the first time my body was physically giving up/tensing and it happened fast. Couldn't talk right, and then mouth wouldn't even open. I finally asked him, "So what happens next?" (haha) and he said "well if you don't continue this slow, deep breathing, then you're gonna pass out." And I still don't know what that means. like are you unconscious but all bodily activities return to normal?
Sorry you are going through all of this!!! I can tell you that more than anxiety can do this! After my third surgery I was in ICU for 9 days and one day I was in so much pain and just having a very difficult day, then all of a sudden the funny breathing started and then my hands started to cramp up and looked like my hands were seizing! It felt tighter and tighter up my arms and then my legs started to do it. I had never had a panic attack this insane, at the time I did not know what it was. I remember even having a hard time trying to talk to them, it was very frightening. They shot me up with something and I woke up later being told it was a massive panic attack maybe from the amount of pain that I was in. I do not like pain meds so I try to stay off of them as much as possible. I hope I NEVER EVER EVER have that happen again. I have had panic attacks before but nothing that bad! I really feel for you if they are just treating you like you are crazy! That seems to be the way that so many treat Chiari patients! My NS did not feel that my attack came from anxiety, but rather from two brain surgeries in two weeks! It made me feel much better. I will still always hope that I never have to feel like that again, everything tightening up and not being able to move my hands was INSANE!!!
Thank you!! I hope you get treated better real soon!!!
You are an amazing support system!!! thank you so much :)
<3<3<3<3<3<3<3<3<3<3<3<3<3<3<3<3<3<3<3<3<3<3<3<3<3<3<3<3<3
I too have been put on anti-psychotics on several occasions, even checked myself into a mental hospital for a week. It is almost unbelievable the things we have to go through. I'm so happy for you and hope your surgery is a complete success!!
I think that I will at least start looking up different emergency rooms in my area. Anyways, thanks for your help!
<3<3<3<3<3<3<3<3<3<3<3<3<3<3<3<3<3<3<3<3<3<3<3<3<3<3<3<3<3
I too have been put on anti-psychotics on several occasions, even checked myself into a mental hospital for a week. It is almost unbelievable the things we have to go through. I'm so happy for you and hope your surgery is a complete success!!
I think that I will at least start looking up different emergency rooms in my area. Anyways, thanks for your help!
I can understand your frustration, I am sorry you aren't getting the support you need/deserve from family. That's why I see this forum as sort of like a secondary family. Have you tried the holter-monitor yet? I know for me, if I try to extend my neck, it just causes more pain.. But everyone is different and obviously that method did not work for you, perhaps you can phone him again to see if has any more suggestions. Don't worry about bothering him though because you are not. And don't speak like that, you are definitely not as good as dead (although I understand why you would say that..) I have suffered for years myself, but I have been blessed with an understanding family/friends.. The first NS I saw was a real piece of work, he was arrogant and smug and I wanted to choke him out! lol. My friend actually did more research on NS's who specialize in the treatment of symptomatic CM1 and we came across Dr. Ellenbogen. The rest is history. I had my PCP make the referral and now next week I am finally having the long anticipated surgery. You must stay persistent, never give up regardless of how bleak everything may be. Has it been recommended that you have the surgery? I have gone to the hospital ENDLESS amounts of times until finally they said "You have a CHRONIC condition.. We cannot treat Chronic conditions." I even had a PA-C recommend that I be placed on HALDOL, (an anti-psychotic) There has been so many times that I wanted to give up because I was tired of being treated like crap.. Most of us with CM1 have gone through the same things we have. You definitely did the right thing by signing up to this forum!
Of course if there is something that YOU are concerned about go to the ER. It doesn't matter how many times you go because you never know if it is truly an emergency or not unless you do go. I would seek help from a different Dr. from the TCI if possible to get more opinions.. IF you have to, research other Chiari specialists, I do believe we have a list of them on this site. Don't ever give up! If anything, I am here for ya. We have a great support system on the CM1 forum. Feel free to add me as a friend and PM me anytime you have to vent or have any questions. If you can, try and talk with SelmaS, she is one of the smartest and knowledgeable of the CM1, she has helped me a lot on my journey..
Take care my friend,
Krystal
Of course if there is something that YOU are concerned about go to the ER. It doesn't matter how many times you go because you never know if it is truly an emergency or not unless you do go. I would seek help from a different Dr. from the TCI if possible to get more opinions.. IF you have to, research other Chiari specialists, I do believe we have a list of them on this site. Don't ever give up! If anything, I am here for ya. We have a great support system on the CM1 forum. Feel free to add me as a friend and PM me anytime you have to vent or have any questions. If you can, try and talk with SelmaS, she is one of the smartest and knowledgeable of the CM1, she has helped me a lot on my journey..
Take care my friend,
Krystal
Thank you Krystal <3 that was very helpful.
I just spoke with Dr. Bolognese, and he asked if they checked the heart (in the ER) and I don't know... They monitored me as usual. He said I need to wear a holter-monitor while I'm having the panic attacks because sometimes in Chiari patients tachycardia happens first and then the anxiety attack.
And the brain-stem pressure! That's what I thought too.
Dr. B said that I should keep my neck extended with my nose angled a little up. I tried that last night while I felt an attack coming on, and all hell broke loose.
Like what am I supposed to do, go to the hospital and just sit there with people who don't know what to do and won't listen to their patient. I feel like I'm as good as dead right now. Even though I have the report from TCI (with pictures) and have obviously been suffering for years--my own family still thinks "it's nothing."
So seriously, any suggestions on what to do next... anybody???
I'm seriously on my own on this, and I don't know what to do the next time it all spirals out of control.
Thank you<3
I just spoke with Dr. Bolognese, and he asked if they checked the heart (in the ER) and I don't know... They monitored me as usual. He said I need to wear a holter-monitor while I'm having the panic attacks because sometimes in Chiari patients tachycardia happens first and then the anxiety attack.
And the brain-stem pressure! That's what I thought too.
Dr. B said that I should keep my neck extended with my nose angled a little up. I tried that last night while I felt an attack coming on, and all hell broke loose.
Like what am I supposed to do, go to the hospital and just sit there with people who don't know what to do and won't listen to their patient. I feel like I'm as good as dead right now. Even though I have the report from TCI (with pictures) and have obviously been suffering for years--my own family still thinks "it's nothing."
So seriously, any suggestions on what to do next... anybody???
I'm seriously on my own on this, and I don't know what to do the next time it all spirals out of control.
Thank you<3
I copied and pasted this from the Chiari care center-FAQs
Depression and anxiety can be caused by chronic illness, pain and uncertainty. All or some may be present in CM-I and syringomyelia. Some patients are placed on medications for depression and anxiety. You could always call the TCI if you have any concerns about your condition... For the anxiety/panic attacks you should talk with your PCP/GP if you have one.. I think that it would okay to take maybe once or twice a day.. One in AM one in PM. When you were DX with CM1, were you tested for sleep apnea? did you have a CINE study done to check for obstruction of CSF? Do uyou have a Syrinx? I believe the anxiety occurs in us Chiarians because our brain stem/spinal cord is being compressed.. I am not a doctor.. But I do have CM1 myself and that is my understanding of why some of our symptoms happen, Like we are unbalanced with our gait because the cerebellum is herniated and is being compressed, the cerebellum helps control balance..
I know your story all too well in reference to the ER. I have worked in the medical field for 6-7 years as a CNA working for people who have had the cruel Alzheimer's disease. My job was to take care of those with the advanced Alzheimer's. You wouldn't believe how many abusive CNA's and LPN/RN's there are, it is absolutely sickening! It isn't to help other people's lives it is about that paycheck they are getting.. Please don't get me wrong, I know and have seen that there are FABULOUS doctors/specialists out there. My NS right now, who will be doing my decompression surgery this Thursday is wonderful! I am so sorry you were treated this way by someone who is supposed to ensure your well being, what is the point of working as an ER physician if you are going to treat your patients like dog doo?
Anyways, to answer your questions
1. Yes panic/anxiety attacks can be a symptom of a CM1, Do call TCI if you EVER have any concerns (this is only YOUR life, you know?)
2. I think Ativan may be beneficial to you, but do speak with someone at the TCI to get their input.. Hey, that is what they are there for, right? :)
3. You need to be tested to see if you have sleep apnea (another symptom of CM1) by having a sleep study done, get a CINE study done (this measures the CSF flow in your brain and if there is an obstruction from the herniated tonsils this causes potential risk for a syrinx (the fluid filled cyst in the spinal cord (this CAN cause paralysis) If you are ever in doubt (because, lets face it, we know our bodies better than anyone because after all it is OUR bodies) Do call the TCI if anything occurs or if you have any questions.. IF they recommend you be evaluated by a ER doc, maybe ask if they could call the hospital in advance to give that ER doc a heads up...
Take care!!
Krystal
Depression and anxiety can be caused by chronic illness, pain and uncertainty. All or some may be present in CM-I and syringomyelia. Some patients are placed on medications for depression and anxiety. You could always call the TCI if you have any concerns about your condition... For the anxiety/panic attacks you should talk with your PCP/GP if you have one.. I think that it would okay to take maybe once or twice a day.. One in AM one in PM. When you were DX with CM1, were you tested for sleep apnea? did you have a CINE study done to check for obstruction of CSF? Do uyou have a Syrinx? I believe the anxiety occurs in us Chiarians because our brain stem/spinal cord is being compressed.. I am not a doctor.. But I do have CM1 myself and that is my understanding of why some of our symptoms happen, Like we are unbalanced with our gait because the cerebellum is herniated and is being compressed, the cerebellum helps control balance..
I know your story all too well in reference to the ER. I have worked in the medical field for 6-7 years as a CNA working for people who have had the cruel Alzheimer's disease. My job was to take care of those with the advanced Alzheimer's. You wouldn't believe how many abusive CNA's and LPN/RN's there are, it is absolutely sickening! It isn't to help other people's lives it is about that paycheck they are getting.. Please don't get me wrong, I know and have seen that there are FABULOUS doctors/specialists out there. My NS right now, who will be doing my decompression surgery this Thursday is wonderful! I am so sorry you were treated this way by someone who is supposed to ensure your well being, what is the point of working as an ER physician if you are going to treat your patients like dog doo?
Anyways, to answer your questions
1. Yes panic/anxiety attacks can be a symptom of a CM1, Do call TCI if you EVER have any concerns (this is only YOUR life, you know?)
2. I think Ativan may be beneficial to you, but do speak with someone at the TCI to get their input.. Hey, that is what they are there for, right? :)
3. You need to be tested to see if you have sleep apnea (another symptom of CM1) by having a sleep study done, get a CINE study done (this measures the CSF flow in your brain and if there is an obstruction from the herniated tonsils this causes potential risk for a syrinx (the fluid filled cyst in the spinal cord (this CAN cause paralysis) If you are ever in doubt (because, lets face it, we know our bodies better than anyone because after all it is OUR bodies) Do call the TCI if anything occurs or if you have any questions.. IF they recommend you be evaluated by a ER doc, maybe ask if they could call the hospital in advance to give that ER doc a heads up...
Take care!!
Krystal
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