Dysautonomia (Autonomic Dysfunction) Community
Does anyone get the crisis-even though non familial?
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This patient support community is for discussions relating to Dysautonomia (Autonomic Dysfunction) including: Postural orthostatic tachycardia syndrome (POTS), neurocardiogenic syncope, mitral valve prolapse dysautonomia, pure autonomic failure, autonomic instability and others.

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Does anyone get the crisis-even though non familial?

I was diagnosed with autnomic neuropathy just recently.  Went to Mayo in Scottsdale, Arizona.  They had a nice autonomic lab there.  I was also told that I have the autonomic crisis.  Was told this can happen even if you don't have the famialial dysautonomia.  My symptoms are severe sweating, (within one minute my hair can look like I just got out of the shower) I am burning from the inside out, I can't talk and my upper arms are heavy and somewhat paralyzed.  I black out, vomit profusely, have to go the bathroom, am completely dilerious and have the worst case of impending doom.  By the time we got to the hospital my blood pressure was 57/36.  They were calling code on me.  Of course this brought on several seizures.  But then a few hours later, besides being weak and having crazy blood pressure fluctuations, I felt pretty okay.  Of course as time goes on, I don't snap out of these and they seem more frequent. Does anyone else get this?  I can't find anything on the crisis part for non familial patients from the net.    
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1509014_tn?1290990785
yes I have this. I was dx with PTS and IST in 2005. It has gotten more frequent and also they seem to last longer as time goes on. I know it is triggered by sudden emotional stress, but Im not sure what else triggers this and I dont know what to do to prevent or stop it. It is an awful feeling, I always think I am dying. It happened at the hospital once and my bp was 40/30. But so far I havent had a seizure. I will be going back to the electrophsyologist and plan to talk to him about this. Please keep us posted, and best of luck.
Amy
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Hi Amy,
I just read your bio.  I too am in my 40's...but am now approaching 47.  Yikes.  I was a normal  healthy girl when this this happened.  It's just so incredible.  But again am sorry you are having to go through this also.  Yes, emotional stress does trigger mine too as well as headaches, tummy aches, heat, hunger, and a lot of medications and chocolate and caffeine.    I too have not worked in four years, used to be an aesthetician and did many writing projects and published a few things, am waiting to get better. I was also a very athletic girl...no more.  I don't know about you, but the worst thing for me is my cycles.  They bring on panic and that dread feeling and I can actually feel pulsating in my brain.  It's not fun and the dizziness is incredible. But for some strange reason I'm feeling pretty okay today. Wish I knew what I was doing right.  Hey, I see you were diagnosed with IST- could you tell me what that is.  And sorry about the POTS.  That is probably causing most of your problems I can imagine.  
Happy Thanksgiving,
Tkimber
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1509014_tn?1290990785
Hi tkimber,
Even though I have had POTS for a while, I was also active, excercising as much as I could, working and taking care of my girls and my mom until she passed away. That is when the POTS got much worse and the other neurological issues started. My level of functioning has gone down so much in the last two years. I am so tired always and for the first time ever I take a NAP almost every day- I have never slept during the day before. I also have a lot of pain in my feet when I walk. IST stands for innappropriate sinus tachycardia; apparently on my last holter moniter my HR was 120 when I was asleep, so that is why I got that dx. My cycles make everything worse also, and I get this awful pain in my legs, feels like a deep ache in the bones. I am at the hospital waiting for my daughter to have a baby today! I am her only support person and I hope and pray I dont end up in the bathroom floor, passing out and throwing up!! Stupid POTS. I hope you have a good day and a great Thanksgiving. I will post baby pictures soon.
Amy`
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1527789_tn?1324928760
I have had a similar experience. Was rushed to hospital in the ambulance after my temperature hit the roof. My Bp was 50/22 and I can remember that I was fighting the staff for a minute because of this severe chest pain that kind of felt like water flushing full speed through my lungs and heart and a build up of pressure. I was awake when the doctor screamed ... and heart rate 22beats, then it dropped to 8 beats and I started to fit. I woke up in ICU with pupils so dilated that I thought it was ghosts (blur) around me. Scans showed no stroke as they thought. My legs and arms still felt so heavy and numb. I am pretty freaked out. The doctor has done a lot of tests and just said that this could happen again. they decided to put a double chamber pacemaker. It seems a little better, but my Bp still drops and I get sweaty and dizzy and occasional blurred vision so bad I have to follow the walls. I am scared... don't know when to call on the doctor, and when to just wait for some symptoms to blow over...
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Avatar_f_tn
Oh my gosh, that is incredibley difficult story you have told. You poor girl.  I hope you are feeling well today.  Did your doctor tell you this is called crisis?  It took them 15 years for me for docs to give it a name. I remember the first few times it happened to me and I remember fighting everyone in the ER.  I didn't want to die.  We have learned that when this happens where I feel like I'm on fire-sweating profusely and of course looking like I'm drunk or something...my family fills the tub with ice cold water and they put me in it and it shocks me back.  It is amazing how well it works for me.  Not sure if I recommend this for everyone as I don't know what your heart will do.  For me it feels like it's either that or I won't be here anymore.  And now everytime this happens, I definitely am aware of the heavy legs and arms-I can't get myself into the tub so they have to help me. Almost like I'm paralyzed for a few moments and I also can't talk-usualy a slur of words.  My doc laughed at me when I told him about the cold tub of water-he said it is probably shocking my blood pressure back up.  It is so instinctual for me to do it. I was having this happen all the time the past four years-which it was only something that happened every five years earlier.  but 4 years ago I had valley fever infection and it affected my spin- so probably made a bad situation worse-then I ended up with thyroid cancer and toxic nodule on the other side and since they have removed the toxic thyroid, crisis only happens every few months or with medication or a severe headache or nauseau.  I hope they can find what is causing yours.  God bless ya suretha!  Hang in there.  
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1527789_tn?1324928760
Hi there, the past few days I have had such chest pain. I just thought it was going to be fine with the pacemaker and all... but this was really bugging me. My friend who is a specialist doctor told me to repeat my electrolytes at the lab. So, yes, I forgot to say. I have Addisons and Diabetes type 1 as well. Turns out my potasium level was high due to a local infection. This kind of freaked me out. So the pacemaker won't do its' job when the potasium goes high, this just put me back into another problem. With the autonomic neuropathy I thought the pacemaker was the awnser...

I haven't tried the cold bath yet. Did they say this episodes was due to the dysautonomia?  Did they do bloodworks with this crisis. What was your calsium levels and others potasium.. Whenever I get a headache with nausea it is linked to the diabetes and addisons. The rest incontinencent bladder and bowel, blurred vision, numbness, Bp and heart rate is part of the dysoutonomia. Sweating could be either one of the three with me. It is just knowing which one it is today is so tricky!

Keep well
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