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..

Interested in more discussions like this? Go to the Epilepsy & Seizures Support Group.

Colleen Young, Connect Director | @colleenyoung | Dec 9, 2015

Hi @ es6903,
First of all, welcome to Connect. How stressful to go through the episodes, so many tests and to have no answers. And on top of it all the pressure of needing answers in 6 days. I can understand your not wanting to be labeled, but at the same time you want a diagnosis.

I'm going to move your message into the Brain & Nervous System group where you'll meet others who may be able to share their experiences with you. People like @Kaia @user_cha86a21b @missybrenton @sbruce @user_ch7453696 @ydjay @kevinkelley

es6903 | @es6903 | Dec 9, 2015

Thank you. New to discussing anything on line. But its worth a shot. Thanks again : )

kevinkelley | @kevinkelley | Dec 9, 2015

In reply to @colleenyoung "Hi @ es6903, First of all, welcome to Connect. How stressful to go through the episodes,..." + (show)

Can you say what it is or what you feel in a few less words...

Sherrie Bruce | @sbruce | Dec 9, 2015

In reply to @es6903 "Thank you. New to discussing anything on line. But its worth a shot. Thanks again :..." + (show)

My daughter who has both gran mal and petite mal seizures has never had a clear EEG, even if she did not experience a seizure during testing. I'm wondering 1) why an AED drug was prescribed if no seizure activity and 2) why you given a certain time to take the AED. Antiepileptic drugs are only effective thru consistent dosage and usually takes weeks to get to a therapeutic level. You can't just start and stop them. Was there a reason given for the prescription to be what it was? Did you see a neurologist? Did you have blood levels checked, including sugar levels? An MRI might be useful. You describe these episodes in great detail, do you remember them or is someone telling you what you did? My daughter usually has no memory of a seizure. Could it be possible that you might be having mini strokes? I hope you get answers. 
 
 
>

es6903 | @es6903 | Dec 11, 2015

I only remember a few pictures of the morning I went to the emergency room. The time I spent in the hospital is cloudy. I remember pieces of my days if I remember anything at all. I had visitors every day but I don't remember seeing them, talking to them. It's like I'm on pause and then time speeds up. My best friends were with me every day and told me what was happening. Now I'm home and even watching TV is frustrating sometimes. I start watching a show... Then it's over. It's weird.

Colleen Young, Connect Director | @colleenyoung | Dec 12, 2015

In reply to @es6903 "I only remember a few pictures of the morning I went to the emergency room. The..." + (show)

Hi @es6903,
@sbruce asked great questions. Are you able to ask your doctor about "1) why an AED drug was prescribed if no seizure activity and 2) why you given a certain time to take the AED."

Did you see a neurologist?

es6903 | @es6903 | Dec 14, 2015

On December 3rd. I was checked in as "seizures" kept in bed and only allowed out of bed with nurse assistance for bathroom use.. I was not allowed to take a shower only sponge bath in bed. Discharged six days later (Dec. 8th) as "Abnormal Involuntary movements" , referred to psychiatrist. The doctor stated nothing is wrong with me, weining me off the AED drug Keppra, reduced it from 500mg every 12 hours to 500mg every 24 hours(starting Saturday Dec 12th).
Then Sunday (Dec 13th) afternoon I started having episodes again..the shaking getting more intense as the day went. I was brought back to emergency and admitted as pseudo seizures. They gave me ativan I think and it knocked me out til 8am this morning. I was given my last dose of Keppra (500mg) today. The doctor who saw me was a internal med doctor. No tests, no blood work...Dr going off previous Dr notes/ history. Discharging me tonight (Dec 14)...
Tomorrow I go to a neurologist for a second opinion.

Colleen Young, Connect Director | @colleenyoung | Dec 15, 2015

Good luck with your appointment with the neurologist today @es6903. I'm sure you'll go with questions in hand. SBruce's questions are a good place to start. Please let us know how it goes.

@sbruce What other questions are important to ask?

es6903 | @es6903 | Dec 16, 2015

I am now diagnosed with PNES. No more tests, no more bloodwork, she (neurologist) didnt even look at the EEG results. She read previous ER visit and dr notes/ information. It's an answer. I'm trying to understand it. Absorb as much information as I can about it so I can get past this. I want my life back. I want to work, come home, take care of my kids. I want to cook for and do for them. I want to socialize with my family and friends again. I have chronic back and neck pain (degenerative disc disease) sciatica, Fibromyalgia. That didn't stop me from enjoying my life, having fun and living. I know pain and I get past it. So this is only temporary. I am going to make an appointment with my physical medicine Dr to recheck the discs in my neck. It is painful and I get bad headaches. I have an appointment with my primary Dr Thursday as a follow up from ER and hospital stay. I also have a psychiatrist appointment next week. I'm open to doing everything I can to get better and enjoy life again. Thank you for your responses @sbruce. Colleen_young

es6903 | @es6903 | Dec 28, 2015

In reply to @es6903 "I am now diagnosed with PNES. No more tests, no more bloodwork, she (neurologist) didnt even..." + (show)

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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