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Monthly shaking episodes that continue to progress
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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Hi @ajast, welcome to Connect. I moved your message to this existing discussion where others are talking about shaking or tremors. Click VIEW & REPLY to read the past posts.
Have you talked to your doctor about these tremors that you're experiencing? Have you considered consulting a specialists like a neurologist?
Gain knoledge in PNES & OR NEAD.
I have tremors with my Dystonia, but mostly involuntary neck movements. Sometimes my husband notices I have tremors. Then on top of that, PAIN...Then PULLING! It's Hell! I said to myself, I would help anybody experiencing this horrible monster disease. I will tell you anything you need from my education, symposiums, my support groups, and my body. Not much from my neurologist. I taught her about Dystonia and Spasmodic Torticollis. Try for a doctor with years under their belt. Not a new graduate who knows little.
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1 ReactionAjast, I am sorry for your tremor episodes. Contact a Movement Disorder Neurologist only. My neurologist and savior is Dr. Arce at Shands, in Jacksonville, FL. He's the best with a warm personality.
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1 ReactionThere are support groups that may offer more information than me. Look up dystonia or spasmodic torticollis and they may help. Thanks for the good luck, I need it. Dorothy
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2 ReactionsSeveral of you have talked about episodes including shaking and other symptoms in yourselves or loved ones, and I wanted to check back and see how you are doing. I'm certain others in this discussion will also benefit from what you share.
@jcnel - how is your child doing?
@ajast - have you been able to learn anything further about your tremors?
@calical - are you continuing to experience the episodes you described? Have you been able to make an appointment to be seen by a neurologist specializing in movement disorders?
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1 Reactionomg 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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1 Reactionwhat if you don't live near a mayo clinic and bcbs of Michigan won't cover out of network care what do I do I am and have been miserable for over a year nothing helps
gadlinium poising ? can't get any dr to test for metal toxicity all say no a available test so if it is that how does one get tested?
there is a yahoo group that are getting some tests and help from mayo what if you don't have access to mayo?