1. < Brain & Nervous System

Monthly shaking episodes that continue to progress

Posted by calical @calical, Aug 31, 2018

Hello everyone!
I have come to the website in hopes that someone can possibly explain what has been happening lately, or if anyone has shared similar symptoms.
I am 23 years old
At the end of June 2018 I suffered from a seizure like episode except I was fully awake and able to communicate. My head felt like it was on fire and I had an overwhelming feeling before it hit its peak. Following that, my head continued to feel like it was burning/being electrocuted, my jaw was shivering, I was very out of it, my legs were shaking my chest was jolting. After going to the emergency room they ruled it as a panic attack.
At the time I had hurt my lower back and just figured it had something to do with the nervous system and I pretty much just wrote it off
Come to the end of July 2018, the episode happens again, except the aftermath was a nightmare. For about 6 days afterwards I would have moments when I had extreme brain fog, and at night I would wake up with my jaw shivering and being completely out of it. Then there was a day where I woke up and was not able to walk or talk normally, I went to get a second MRI that day, and ended up going into my worst episode to that date, I started of by vomiting and my legs and jaw were shaking out of control. I went to the emergency room once again and they were able to stop the shaking with some antiseizure medicine and Ativan.
And after that I just felt extremely overwhelmed from everything and it took me about a month to be able to see my friends and other family members. After that visit to the ER I had multiple EEGs, an MRI with contrast, and a tilt table test that all came back normal, but I had never had an episode while attached to the eeg, but my neurologist doesn't think I'm having seizures. At the end of August 2018 (about two days ago) I had yet another attack, jaw shivering head feeling on fire, except this time it came with serious irritation and an angry feeling. It was more intense than what I had experienced before and ever sense then I haven't been feeling like myself. The day after I felt like my limbs kept flailing around and I had no control over my body like I used to. Things have gotten slightly better but I can barely focus on watching television or on anything, my head has pressure and is off and on feeling like it's on fire, I'm very emotional (which could be from being overwhelmed with everything) but I also can't seem to focus on anything and I can walk, but I have a very short limit on how far I can go. It's crazy how I was just living a regular life, and now my whole world has been turned upside down. It hasn't been very long since this all has started, and I know people have to deal with much worse, but I'm tried of putting my life on hold and not being able to comfortably live my life without feeling like I'm losing my mind.
My neurologists last opinion was headaches, but I haven't been able to find anyone dealing with these monthly episodes of shaking and the brain fog that follows
Any kind of input would help! And thank you for taking the time out of your day to read this

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eazy630 | @eazy630 | Jan 24, 2019

As was previously shared by @jcnel I too have dealth with PNES and some of what you wrote rang somewhat familiar.

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penn1023 | @penn1023 | Nov 8, 2019
In reply to @cathy514 "omg I have had what I call internal vibrations that rarely go away, I was told..." + (show)
@cathy514

omg I have had what I call internal vibrations that rarely go away, I was told its anxiety by 2 neurologist but it's not anxiety it's tremors of some kind that resemble Parkinson's the internal vibrations never go away I wake up with them and tremor like shaking hands I can't spell or add and subtract I takes 2-7 times to address a envelope correctly I have insomnia over a year and I cannot write 1/4 my hand will not do I can try and try and my hand will not do it Drs dismiss it as anxiety I had Meg nerve pinched at L5 and c5 c6 c7 I see u of m dr neurosurgeon in January long wait but hope to get help I am tired all the time babe back hip and neck pain every day nurse said looks like dystonia but Drs say anxiety and dismiss my concerns was told see a psychiatrist he and therapist said looks like nerve damage or damage from back epidural as all symptoms came after it, hoping to get answers in January this is a miserable condition my daughters dr said he thinks fibermyalgia but no test for it I can't get help or resolve I have horrible tinnitus my teeth chatter and dry eyes and cannot see at night to drive I am scared and disappointed with Drs I just want to be me and get my life back

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Did you ever take Fluoroquinolone antibiotics like levaquin or cipro? These can be very toxic to some people. Some of the side effects are like you describe and can last for years.If so, There s a Facebook group called Fluoroquinolone Toxicity group. Join us.

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Leonard | @jakedduck1 | Nov 9, 2019
In reply to @calical "Hello everything it's calical! I just wanted to update everyone on what has been going on...." + (show)
@calical

Hello everything it's calical! I just wanted to update everyone on what has been going on. So for the past few months I have been tremor and shake free! I stopped having the unexplained tremor like episodes that would leave me debilitated but I've still dealt with other weird symptoms such as slurring, brain fog, head burning sensations and other weird head feelings. My first neurologists thought it was some kind of complex migraine and then my second opinion said it was anxiety which we all know is not the case. I have had to deal with anxiety after going through all of this but I know an anxiety attack wouldn't have put me in a wheelchair for a whole week. My MRI with contrast came back because they saw something on my brain but it was very small and they said it was a cavernoma but it had nothing to do with the symptoms I was dealing with. I am still undiagnosed which is frustrating but seeing as things have gotten better I am able to finally live my life again. Though the thought and fear of what this could be or what if it comes back always lingers, I'm finding a way to not allow it to define my life anymore. I am supposed to have a repeat head MRI this month and I'm hoping to get a full spinal MRI though I feel as if none of the doctors take me as seriously because I am able to walk and talk normally. Such a shame, but I will keep everyone posted on this and I wish the best for everyone and I hope everyone here will find answers as well

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@calical
I was wondering if you'd read over the link below and see if it has any correlation in the symptoms you have been having.
https://www.medicalnewstoday.com/articles/319700.
May I ask a couple of questions?
Do you have anxiety or depressive issues? Headaches?
You mention your fully awake and able to communicate then you say you were very out of it. Can you clarify these statements? You mention flailing, was that a feeling or we're they actually moving?
Have you ever lost consciousness or slept after an episode?
Take care,
Jake

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Moderator
Lisa Lucier, Moderator | @lisalucier | Feb 7, 2020
In reply to @calical "Hello everything it's calical! I just wanted to update everyone on what has been going on...." + (show)
@calical

Hello everything it's calical! I just wanted to update everyone on what has been going on. So for the past few months I have been tremor and shake free! I stopped having the unexplained tremor like episodes that would leave me debilitated but I've still dealt with other weird symptoms such as slurring, brain fog, head burning sensations and other weird head feelings. My first neurologists thought it was some kind of complex migraine and then my second opinion said it was anxiety which we all know is not the case. I have had to deal with anxiety after going through all of this but I know an anxiety attack wouldn't have put me in a wheelchair for a whole week. My MRI with contrast came back because they saw something on my brain but it was very small and they said it was a cavernoma but it had nothing to do with the symptoms I was dealing with. I am still undiagnosed which is frustrating but seeing as things have gotten better I am able to finally live my life again. Though the thought and fear of what this could be or what if it comes back always lingers, I'm finding a way to not allow it to define my life anymore. I am supposed to have a repeat head MRI this month and I'm hoping to get a full spinal MRI though I feel as if none of the doctors take me as seriously because I am able to walk and talk normally. Such a shame, but I will keep everyone posted on this and I wish the best for everyone and I hope everyone here will find answers as well

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Hi, @calical - just wondering if you've had any more of the shakes and brain fog? What were the results of your further MRI(s)? Were you able to get a full spinal MRI, too?

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katcollins | @katcollins | Apr 13, 2023
In reply to @oakbourne "A movementy disorder neurologist is the only way to go. There are more of them than..." + (show)
@oakbourne

A movementy disorder neurologist is the only way to go. There are more of them than in the past. You may have to travel to a larger town or city and you may find one. Good Luck. A movement disorder neurologist is the only way to go. Dorothy

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This is absolutely true. I was in two hospitals and saw numerous doctors. I was tested for everything. I finally went to a movement disorder neurologist and he believes and understood what I was saying.
Best of luck to everyone,
Kat

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