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

Interested in more discussions like this? Go to the Brain & Nervous System Support Group.

It might help to look through the neurosymptoms.org website at http://www.neurosymptoms.org/#. You'll see many, if not all, of your symptoms there and good information to explain why this is real and not all in your head, even though the tests show you are the picture of health. I am kind of where you are, maybe just a little bit further along in finding my treatment. I was diagnosed with dystonia 10 years ago, then re-evaluated last month by a movement disorders specialist after additional types of symptoms began to develop (jerking, twitching, etc.). This time around I had more extensive testing including a brain MRI and was diagnosed with "functional movement disorder". On the one hand I was delighted to learn I did not have a brain tumor or any other organic problems of the brain, but it also meant I still do have problems with my nervous system. As my neurologists explained, the brain has hardware and software, and in my case I have a software problem. The good news is there is treatment for functional nervous disorders and prognosis for getting better is encouraging with the right treatment. It has been challenging to wrap my mind around this new diagnosis, but reading the information at the neurosymptoms.org website more than once has greatly helped me understand and accept all of this.

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Another good website that has helped me understand and accept my functional nervous disorder is FNDHope, https://fndhope.org/fnd-guide/

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@oakbourne

Cathy, do you think you could call Dr. Carlos Arce? At least you could talk to him. He looks out for his Dystonia patients.

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Sure I would to talk to him or anyone who can help, I am so defeated it seems no dr understands and maybe He can help me, I want my life back so badly

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@jubilee

It might help to look through the neurosymptoms.org website at http://www.neurosymptoms.org/#. You'll see many, if not all, of your symptoms there and good information to explain why this is real and not all in your head, even though the tests show you are the picture of health. I am kind of where you are, maybe just a little bit further along in finding my treatment. I was diagnosed with dystonia 10 years ago, then re-evaluated last month by a movement disorders specialist after additional types of symptoms began to develop (jerking, twitching, etc.). This time around I had more extensive testing including a brain MRI and was diagnosed with "functional movement disorder". On the one hand I was delighted to learn I did not have a brain tumor or any other organic problems of the brain, but it also meant I still do have problems with my nervous system. As my neurologists explained, the brain has hardware and software, and in my case I have a software problem. The good news is there is treatment for functional nervous disorders and prognosis for getting better is encouraging with the right treatment. It has been challenging to wrap my mind around this new diagnosis, but reading the information at the neurosymptoms.org website more than once has greatly helped me understand and accept all of this.

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Thank you and everyone, the kindness of this group is amazing, me pcp I have had for 16 years doesn't understand and keeps thinking its anxiety due to the fall and injuries
it's not anxiety it's internal vibrations? tinnitus insomnia cognitive problems , dry eyes back hip knee and neck pain and left arm goes numb pinched nerve at c 5 6 7 and L5 but still shakes while numb, i pray and cry a lot , I just want to be me again

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Cathy, Dr. Arce's number is 904-383-1022. He's with Shands, Univerity of Florida, in Jacksonville. Talk to his receptionist/office manager who is nice and she can guide you for help. Yes, I've had the internal shakiness all my life. I've also had dizziness to the point of having a hard time driving. I didn't want to graduate from high school because that meant that I would have to work. My father even called me a misfit. This came from my mother's side of the family. I got Dystonia from my Mom's side and Type 1 diabetes and Microscopic Colitis from my Dad's side. I got bad genes from both sides of my family and they were poor parents. They didn't know how to parent. My life has been HELL!

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As I have stated before, Dystonia is only diagnosed by your movements and neuro checks. MRIs, Cat Scans, X-rays, and nothing in radiology will diagnose Dystonia. Only how you act. Please don't waste your money on this. If they think it's something else, go for the Cat Scans, MRIs, and X-rays, but your brain will show nothing, zilch, nada pertaining to Dystonia.

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My internal vibrating or shakiness started spring of last year and has only gotten worse since. I finally went to the doctor who sent me to a neurologist. I have undergone several tests per the neurologist. I have been diagnosed with POTS and Vitamin B deficiency so far as a result of the tests. I am awaiting results of blood tests to rule out thyroid issues, Rocky Mountain Spotted fever and Lymes Disease. I am having a nerve conduction test and possibly an EMG next week. The neurologist has already decided that I don't have Parkinson's, MS or anxiety disorder, although the internal tremors do cause me some anxiety. I'm an otherwise healthy 66 year old retired nurse with no medical history except for a stent of PVCs which lasted 18 months which stopped a few years ago. The Dr. has started me on Neurontin and Vitamin B therapy. I am having no pain but this condition is clearly NOT normal. I will check this board from time to time and will keep it updated as to my situation.

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To Calical... Look up Transverse Myelitis. Mayne similar symptoms to what you are experiencing...?

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@tigertoo

My internal vibrating or shakiness started spring of last year and has only gotten worse since. I finally went to the doctor who sent me to a neurologist. I have undergone several tests per the neurologist. I have been diagnosed with POTS and Vitamin B deficiency so far as a result of the tests. I am awaiting results of blood tests to rule out thyroid issues, Rocky Mountain Spotted fever and Lymes Disease. I am having a nerve conduction test and possibly an EMG next week. The neurologist has already decided that I don't have Parkinson's, MS or anxiety disorder, although the internal tremors do cause me some anxiety. I'm an otherwise healthy 66 year old retired nurse with no medical history except for a stent of PVCs which lasted 18 months which stopped a few years ago. The Dr. has started me on Neurontin and Vitamin B therapy. I am having no pain but this condition is clearly NOT normal. I will check this board from time to time and will keep it updated as to my situation.

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Hi, @tigertoo, and welcome to Mayo Clinic Connect. Thanks for sharing some of your situation. It sounds as though you are starting to get some answers with the POTS and Vitamin B deficiency diagnoses, but are still hoping to get more information on the internal vibrating or shakiness you've experienced.

I'd like you to meet some of the others in this discussion, such as @oakbourne @cathy514 @jubilee @hopeful33250 @1000016352 and others, who may have some thoughts for you as you wait for test results.

How are these vibrations and shakiness affecting your day-to-day life, @tigertoo?

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@tigertoo

My internal vibrating or shakiness started spring of last year and has only gotten worse since. I finally went to the doctor who sent me to a neurologist. I have undergone several tests per the neurologist. I have been diagnosed with POTS and Vitamin B deficiency so far as a result of the tests. I am awaiting results of blood tests to rule out thyroid issues, Rocky Mountain Spotted fever and Lymes Disease. I am having a nerve conduction test and possibly an EMG next week. The neurologist has already decided that I don't have Parkinson's, MS or anxiety disorder, although the internal tremors do cause me some anxiety. I'm an otherwise healthy 66 year old retired nurse with no medical history except for a stent of PVCs which lasted 18 months which stopped a few years ago. The Dr. has started me on Neurontin and Vitamin B therapy. I am having no pain but this condition is clearly NOT normal. I will check this board from time to time and will keep it updated as to my situation.

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Hello @tigertoo

I would like to join Lisa (@lisalucier) in welcoming you to Mayo Connect. The internal shakiness/tremors is often related to Parkinson's (PD). I do understand that your neurologist has ruled PD out but you might keep this diagnosis in the back of your mind if no other diagnosis materializes. I had symptoms of PD for almost 20 years and saw a number of doctors before a definitive diagnosis was made. PD is diagnosed in a rather peculiar way in that if nothing else is the obvious diagnosis the doctor will often give you some carbidopa/levodopa and see if that helps the symptoms. If it does help, then they decide you have PD. However, I'm not a medical professional and I can only share my own experiences.

Are you feeling any better with the neurontin and the Vitamin B therapy? Do you have any other symptoms that relate to balance, unsteady gait, low volume voice, constipation, etc.?

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