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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oakbourne | @oakbourne | Sep 2, 2018

Are you talking about tremors or actual shaking? They are similar but there's a difference.

oakbourne | @oakbourne | Sep 2, 2018

If you have Dystonia, it's hard to diagnose!!! You need a Movement Disorder Neurologist. Only a Specialist! Not a regular neurologist, mind you, but a MOVEMENT DISORDER NEUROLOGIST. Believe you me, I wouldn't wish this disease on my worst enemy. It's a MONSTER! Yes, you can have horrific pain, headaches, muscle soreness, problem walking, balance problems, tremors, you name it! I take Klonopin which can give you brain fog but it helps. I can't live without it. I've had Selective Denervation where they cut seven nerves in my neck. It helped! Dr. Arce is the BEST! He's in Shands Hospital located in Jacksonville, FL. Don't mess with regular neurologist, only MOVEMENT DISORDER NEUROLOGIST. I had a support group for Dystonia in Savannah, and I know what I'm talking about. Plus I've attended many symposiums on Dystonia and I'm a RN. For GOD'S Sake, don't let them call you CRAZY!

Kanaaz Pereira, Connect Moderator | @kanaazpereira | Sep 2, 2018

Hi @calical,

I can only imagine how stressful it must be to go through the episodes, so many tests and to have no answers. Here a few related discussions you might like to read on Connect:
– Released from the hospital for "episodes". All tests clear. Confused https://connect.mayoclinic.org/discussion/i-was-recently-released-from-the-hospital-for-episodes-all-testing-came/
– Conversion disorder with pseudoseizures (PNES) https://connect.mayoclinic.org/discussion/well-i-hope-i-can-be-of-help-in-2009-i-had/
– Non-Epileptic Seizures or PNES https://connect.mayoclinic.org/discussion/non-epileptic-seizures-or-pnes/

I'd also like to invite @drivenbyme @hosey70 @es6903 @sbruce @ccgarey to join this discussion and share their insights. @calical, have you noticed any triggers or stressors before these episodes?

jcnel | @jcnel | Sep 8, 2018

It's possible you could be displaying signs of nonepileptic seizures and or pnes and or nead.

calical | @calical | Sep 10, 2018

In reply to @oakbourne "Are you talking about tremors or actual shaking? They are similar but there's a difference." + (show)

Oh my goodness thank you so much for this response I've been looking at videos and the similarities are insane. I don't know whether or not to cry because I'm happy to know I'm not crazy or sad to know this is actually something, but like I've been telling myself things could always be worse! I'll be making an appointment with a movement disorder neurologists this week, since this is all so new I never even knew that was a thing. Thank you so much again for this reply, even if it isn't a definite, it's something that I can suggest for them to look into. Yeah but it's like a tremor more than a shaking for sure. It's crazy how it has happened so far at the end of every month and then it takes a few days for me to recoup and then I'm back to normal (aside from the anxiety that this has brought on) I wish you the best of luck with everything and I hope things lighten up for you!

renee1992 | @renee1992 | Sep 25, 2018

In reply to @oakbourne "If you have Dystonia, it's hard to diagnose!!! You need a Movement Disorder Neurologist. Only a..." + (show)

These are my symptoms & they've worsened over the past 6 months. Tremor, heart rate & BP increase immediately & with daily activity, brain fog, memory loss... Still no diagnosis & they referred me back to Neurologist that said I had Anxiety & Non epileptic events and he told us there was nothing he could do. What do I do? Seeing Rhuemetology, Endocrine... As well. They all are that something is definately wrong & labs & my presence confirms this. I don't want to see the same Neurologist that told us he couldn't do anything else.

oakbourne | @oakbourne | Sep 25, 2018

This sounds like Dystonia. It can effect every muscle in your body. Mine is mostly focal which means it mainly effects one or two areas of my body. Yours may be generalized which can effect everywhere. This disease attacks mostly women and Northern Europeans. It's GENETIC! Do you know anyone in your family with this madness? Many people are embarrassed with this disease and try to hide it. Just thirty years ago it was labeled a mental disease. Can you believe that one? They asked me at the Medical College of GA, if I was a drug user and used psychiatric drugs. Yes, they will bring on this disease. Also over the counter meds can bring it out. I can't take many antihistamines meds. They're a NO NO! Find a good doctor and somebody who cares. Neurologists are notorious for being cranky and not helpful. Believe me, I've been to many. Contact the NSTA, they're a wealth of information. God Bless and keep me informed so I can help in any way. Regards, Dorothy

oakbourne | @oakbourne | Sep 25, 2018

Lab results show nothing concerning Dystonia. Don't get involved in that scam. The only way to diagnose Dystonia is from body movements, ROM, pain, pulling and hell. Labs show ZILCH! I was diagnosed over the phone by someone who had dystonia. Support groups are a God-Send.

oakbourne | @oakbourne | Sep 25, 2018

This disease is TREMORS!!!!!

ajast | @ajast | Sep 25, 2018

Hy i have big problem with tremor episodes. Tremor is present trugh tthe whole day, it is very hard. It can star with now alert. Frist in the left hand and than he moves to the legs. It is ritmical. Sometimes is stronger and sometimes less stroneger. can you gave me some sugestions, what can i do to get better.