Released from the hospital for "episodes". All tests clear. Confused

Posted by es6903 @es6903, Dec 9, 2015

I was recently released from the hospital for “episodes”. All testing came back negative and is very frustrating for me. I have chronic back and neck pain.. then three years ago I was also diagnosed with fibromyalgia.. i stay active and go for acupuncture regularly. for the past few months something has changed. I have episodes of being extremely tired, my face goes pale, my eyes lids become heavy and low, my jaw tightens and I either slur my words or loss my speech all together. I also became stiff and cant control my body meaning I cant walk or move my arms and my hands would clench into a fist… its like I was stuck inside looking out unable to respond for a few hours. recently that changed. the back of my neck hurts a lot, I get a really back headache, I turn pale, my head turns to the right shaking, I lose control and I shake and jerk my head and body. I cant speak and just grunt. I also stare off for 1-5 minutes and cant respond to questions during my episode. for the first two days in the hospital the body movements became stronger and started coming like waves more and more. then they put me on Keppra that second night. . by the next day I had only three episodes, becoming quiet, getting a little dizzy and having a blank stare for about a minute or so. I also smack my lips and am very thirsty when i snap out of it. im tired but resume talking or whatever im doing but i get very tired. I was told its a mental block and referred to mental heath. I was released last night and have 6 days of Keppra meds to take before its discontinued. I’m scared the episodes will escalate again. I don’t want to be labeled with seizures or anything like that but I need help and answers as to why this is happening. The doctor in the hospital said the 24 EEG was clear. Yet when I spoke with the tech he said he saw something. I don’t understand how Im going to go back to work next week or drive again. Has anyone gone through this? Any advise? I have 6 days to figure this out before the medicine runs out. and i go back to work..

How are you doing now?

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Hi, @es6903 – I'd also echo @jcnel, wondering how you are doing now? Are you continuing to experience seizures and other symptoms?

@jcnel – do you experience seizures, as well?

@kevinkelley and @sandydreamsbig – also thinking of you. How are you doing?

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@hosey70

so would you recommend going to mayo

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@hosey70 l was also diagnosed with conversion disorder but l had a brai.n injury previously. I have had a lot of neurologist and fired all but one. He transferred to MS. But l also have autoimmune encephalopathy. My gasternologis previously said it was from medication and probably my antidepressant because was on them for years. I have lots of allergic reactions to meds. I was doing my research and l found the symptoms l am having is also due to autoimmune encephalitis because your test can come back norm and you can have that illness. I would suggest you do your research. Today l am going to a new gp because my old one retired and l went to the mayo clinic 4 times last year and l am going in October. I highly recommend if you can go. Good luck and God bless!!!

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Hi:
I would get all of your reports and disks and get a second opinion. I was at the Mayo in April of this year for extensive testing and they diagnosed me with FND and now I just saw on my chart that I have an enlarged right ventricle, enlarged atrium, a thickened mitral valve, a thickened aorta valve, and advanced degenerative arthritis in my cervical with Subluxation in the Cervical Spine. The Cardiologist at the Mayo told me there was absolutely nothing wrong with my heart. Is he nuts or stupid? Or just lazy.
Get all records and start over and don’t take no for an answer. I do not tell any Doctor in my hometown that I was at the Mayo Clinic because of that Diagnosis because even if FND was a real problem most Doctors do not understand FND I don’t either. There is always a reason for what ever we have. Good luck

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@es6903

So now I have a diagnosis of conversion disorder with psuedoseizures. However I can’t agree with it. I was taking Nortriptyline for my Fibromyalgia. I believe this medicine’s side effects are what caused my seizures and other symptoms. After having severe headaches (like a bad hangover feeling) every morning for about 8 days everything stopped. I didn’t take it anymore. None of the doctors checked for possible side effects of this medicine… I did. Since the doctors had no answers ofcouse it was assumed it was in my head.. A mental block. I complied and went to see a psychiatrist. The psychiatrist changed my medicine to cymbalta and said not to take the other medicine because of something elevated on my EKG. I don’t have a traumatic event or deep rooted sexual abuse in my past. I’m not depressed or in need of attention. I don’t suffer from depression. I have Fibromyalgia. I have degenerative disc disease, carpal tunnel, chronic neck & back pain …yes. I live with this and still manage to work, be active, exercise. do yoga, gp for acupuncture, socialize with great friends & family, date and function in the most positive way I can. The only thing I got out of this is to be your biggest advocate! Educate yourself, do your own research and never give up. For me, I’m looking into more alternative medicine, acupuncture, foods, exercise, meditation, yoga… I’m not taking any meds right now. Maybe that will change but for now this is where I’m at. Thank you for hearing me.

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I have been in your shoes so many times! I was also recently diagnosed with Conversion Disorder, after CONSTANTLY being MISDIAGNOSED, BLAMED, AND THROWN OUT of a HOSPITAL!!!!! My Epileptic Seizure activity, is confusing to myself as well, and I don't really understand exactly what Conversion Disorder is or looks like, when my Neurologists saw my latest EEG report this past August! I must take medications to control my Epilepsy; as it came from being unconscious for 10 days, following a massive Stroke on 5/4/01! I WISH I DIDN'T have to be on ANY MEDICATIONS, because the SIDE EFFECTS can HARM and KILL !!!!! I was lucky that my Roommate hadn't left for work the morning I experienced what I now call"the event"! I am in an Aphasia group, 2 Stroke Support Groups, attend a Stroke Camp yearly (am on youtube-www.strokecamp.org look up Brigham and Women's/Faulkner Hospital
Ashland, MA) for the past 3 years, and have had the best experiences I could have ever imagined, and am PROUD to be a STROKE SURVIVOR, (NOT A VICTIM ANYMORE!!!!!) My book entitled "Misunderstood and Resilient", helped me come out of my deep Depression, Anxiety, and explain to anyone who reads and hopefully learns from my story, that LIFE may be UNKIND, COMPLICATED, and DIFFICULT; but it's up to the INDIVIDUAL, to decide what makes LIFE WORTHWHILE! My FAMILY and FRIENDS have made the BIGGEST difference in my life, and I know my Mother is looking down on me from above tonight and SMILING! I am dedicating my book to my ENTIRE FAMILY, including my Dear deceased Mother, Father, 2 sisters and my brother, and my 7 Nieces and Nephews, all whom contributed to my writing this book in the first place! Believe me when I say, that I always had doubts about even writing such a book, because it meant "rehashing the past and telling the TRUTH:" However, if I make ONE person's day or a DIFFERENCE in how the DISABLED are TREATED by the MEDICAL PROFESSION, then I have done MY JOB!!!!!

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@lisalucier

Hi, @es6903 – I'd also echo @jcnel, wondering how you are doing now? Are you continuing to experience seizures and other symptoms?

@jcnel – do you experience seizures, as well?

@kevinkelley and @sandydreamsbig – also thinking of you. How are you doing?

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I need to start listening to some of the Connect Moderators; as I can see how listening to experts and being able to ask questions, can really make a big difference!

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