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Dysautonomia Episodes Are Now Being Labeled As A "fake" Seizure..


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Hey everyone, I’m Jillian and I’m 16. I've been sick since I was 3 years old. At 15 years old I was finally diagnosed with Dysautonomia by a cardiologist. 8 months he had me on the same medication, and it didn't help. He kept saying "wait another month and see if it works, sometimes it takes a while". Well I’ve waited 8 months with no luck. So i went back to my neurologist and after he found out I was diagnosed with dysautonomia he said he really doesn’t know what treatment to try next (he was really nice and acts more like my friend than my doctor lol) well he said he would refer me to another neurologist at a children’s hospital to see what he says then told me after seeing the new neurologist i should keep going to him and the new one. Well I went to the new neurologist and he asked me to explain my "Episodes" - which took forever because I have so many different episodes that have happen. My newest episode is (no matter if I’m standing, sitting, laying down) I will get light headed, dizzy, bust into a cold sweat and it looks like someone poured a gallon of water on me, then I will lose my ability to stand, move, talk- I lose all ability to communicate. However, even with the ringing in my ears I can STILL hear people- they sound far away but I can still hear them. The new symptom added to my episode started 2 weeks ago and has been happening with every episode now and the symptom is- I stop breathing. I try to breath but my lungs won’t respond, After about 1 minute I can start breathing again but I don't start breathing normally- I breath shallow until the full episode is over. It’s like my whole body is paralyzed and I’m just trapped. My mom says I turn very pale, and even though I’m sweating I feel as cold as ice. These last for 3-10 minutes before I can even talk to anyone. I told the new neurologist all this and even told the neurologist that I was diagnosed with dysautonomia. The neurologist completely ignored dysautonomia. He then had be lay down on the bed, take my pulse and BP, then sit up and took my pulse and BP then when he had me stand up he took my pulse then when he was taking my BP I noticed it was taking him longer to get a reading than it did with the other two, he had the BP cuff bumped up a little over 200 for almost 2 minutes ( I thought my arm was going to pop off O_O ) and after 2 minutes he gave up and said "I couldn’t feel your artery, I couldn't find it at all, that's weird." Well 30 minutes pass of just talking- then came the time where he gave me his opinion. He wants me admitted to the hospital for 2 weeks with EEG EKG on me 24/7 during the hospital stay. He said it could be my brain, heart, or (this really made me mad) "psychogenic seizure'' which means "fake" seizure. I told him I had over 15 tests done on my brain, heart, and I went through a whole 4 days of mental test and it was proven I had no mental problems. My original neurologist already did an EEG (using strobe light) and said it didn't show any thing. I had an EKG done and only showed my heart would jump 50bpm at random times. This new neurologist is completely ignoring dysautonomia. Now the new neurologist wants my mom to set up my admission date by next week, I find it pointless to have all these test done that I’ve already had done before. I came to him for a treatment, not new test, or a new "diagnosis". My original neurologist wants to send me to a new neurologist who is actually an autonomic specialist so I will be waiting on hearing when my appointment with her is. So what do you think about all this?

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It seems that there are some very dodgy neurologists out there! I nearly got referred to a functional neurologist, looked up what they do, and promptly requested that the referral be cancelled. Functional neurology is the name given to what used to be called "hysteria", i.e. a derogatory way of saying, "we can't figure out what this is, so it must all be in the patient's mind". It can be worth googling "functional neurology" so that you know what to avoid. If you're being referred to a neurologist who specialises in ANS disorders, that sounds a lot better.

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I think some docs like to restart at the beginning when they see a complicated case so as to be sure that nothing was missed. So many of the tests we dysautonomia patients depend on only catch things if they are happening at that very moment.

Also...what you were describing reminded me of a show I saw on something called "swallow syncope".You may want to Google that a.d see if it fits with your symptoms and if so talk to the docs about it.

Hope you get to the bottom of it.

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A fifteen year old girl just finished at the Pots Treatment Center in Dallas and one of her main complaints were pseudo seizures. She is reporting almost 100 percent recovery. I've not always been the biggest cheerleader of that place since I didn't get a lot of improvement from my treatment there, but there is obviously something to it. It seems the young teens get the most rapid and complete symptom reduction. Worth looking into.

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Hi Jillian,

First, I'm so sorry that you have been going through all of this. :( I agree with others that it will definitely be best for you to see an autonomic specialist, but unless they can squeeze you in really quickly, you may have a bit of a wait for this.

Personally, I think that there might be some value in being hospitalized. My very first episode that led to my life changing completely was similar to what you described. I lost consciousness twice, was completely soaked instantly with sweat, couldn't move at all (like a kind of intense weakness paralysis). I was in a restaurant at the time and when the paramedics came I couldn't speak to them; didn't have the breath in me. They gave me oxygen and a bag of IV before even wheeling me out of the restaurant, then more after that. It would be good if they could capture one of your episodes while you are monitored so they'll know if it is something to be concerned about or just part of the dysautonomia.

My family doc and an ER doc hospitalized me about 6 weeks later because they couldn't figure out what was going on. They did tons of tests, but I think the most valuable thing was that they could see what my monitors looked like all the time. Whenever I would get up to go to the bathroom the nurses would come running because of my heart rate. The nurses also would tell me about some irregular heart rhythms that they saw through the night - which for me was confirmation of what I was already feeling. This allowed me/them to figure out patterns, which would not have shown up during a brief ER or doc visit. They also get to know you a little bit which helps them to understand that this is definitely not an anxiety or attention seeking issue. Also, the information you get from 24/7 monitoring will be useful to the autonomic specialist whenever you are able to get in to see her.

The ER doc told me as he was going through the admission papers that they will need to look at ruling out issues with heart, brain, lungs, etc,etc and if we don't find anything we'll have to look at anxiety. I accepted that as part of his elimination process and realized that he was saying it because to him at that point I was a stranger (a new doc doesn't know us as an individual at all) and as long as he didn't label me without ruling out the other things first, I was ok with it. It sounds like your doc is concerned and he is wanting to be thorough. I know it's hard to go through repeated testing, but this process may be something that will help you find answers in the end.

Do you know what is going on with your heart rate and blood pressure during your episodes?

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i'm sorry, i know how discouraging that must be. however, maybe it's best not to focus on that one word (psychogenic seizure). try to get whatever positive you can out of the experience - or, forget about it and see someone else. i don't think you'll be helped in the hospital unless they catch one of your episodes. you know you can't fake sweating, etc., so you know in your heart that this is not made up. don't let anyone tell you it is or make you feel like it is.

i think a lot of us just have to take the best our doctors can offer us until we see someone better. for example, my cardiologist used the word "deconditioning," which i hated - but, he did give me more answers in terms of diagnosis and testing than anyone else i had seen before. i'm just taking the benefit of what i can get from each doctor.

try to stay focused on what you know is true, and keep searching for answers. you have support here. :)

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Most neurologists don't know much about dysautonomia, so I think you are right to wait for an autonomic specialist. Otherwise, maybe ther is a dr in your area on the Dinet dr's list? Or an electrophysiologist? Going to a dr with experience makes a big difference. POTS drugs can take a while to work, but not 8 months. Hope you get the right dr. In the meanwhile, hang in there!

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The term "functional" in medicine means that there is nothing anatomically wrong on imaging or other testing, eg functional abdominal pain means that your stomach appears normal on EGD, etc. It really is not supposed to mean it's all in your head.

Absolutely, but not all doctors think that way. If you google functional neurology, there are plenty of papers on subjects such as How to lie to your patients, or Which terms are least likely to make the patient think you don't believe them ("likely to offend" was the term used, I believe). It's a direct descendant of the very nasty medieval concept of "hysteria", involving such terms as "conversion disorder" and "somatoform disorders" along the way. I've read a website by a functional neurologist where he classifies ME/CFS as "not due to a detectable underlying medical or neurological condition" (interesting news, considering that it has been classified as a neuro-immune disorder by all the authorities, including the WHO, for decades now), and boasts of how many of his patients told him that once he had reassured them that he did believe them, their symptoms magically vanished.

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