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

Liked by Lisa Lucier

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.?

Liked by Lisa Lucier

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@hopeful33250

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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I am sorry to hear about your PD, but Dystonia is a tough road to hoe. I am in the medical field and I know Dystonia like the back of my hand. The disease treats everyone differently and YES, sometimes you wish it would kill you. You have a disease that everyone has heard about, knows about, unliike Dystonia, where doctors don't undertstand the disease. Being born with this disease…I know it well.

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Hi, @oakbourne@hopeful33250 is responding to @tigertoo and trying to help her, just as you are. Some of the topics mentioned by @hopeful33250 come from mentions in posts by @tigertoo, such as neurontin and Vitamin B. @hopeful33250 is making suggestions of things that @tigertoo might want to keep in mind and is not responding to you in any way.

@oakbourne – please be sure and click VIEW & REPLY in the email notification so that you can view the whole discussion and also which member is responding to whom.

I think we are all on the same page with trying to help @tigertoo and other members in this discussion, so hoping we can go peacefully on with the conversation. Thanks to both @hopeful33250 and @oakbourne for all your contributions to make this a more robust discussion.

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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

Liked by Lisa Lucier, Leonard

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@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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I'm glad you finally found results! I've never heard of this. Please keep us informed on your progression. I hope everything comes out okay. I have prayed for you and will do it again. You have been through a lot.

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@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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I just got referred to a movement dr by a u of m dr I seen for the pinched nerve in my neck, he say not anxiety as pcp it is move ment disorder he will be operating on my pinched nerve and revering me to movement dr

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Thank you oakborne

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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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I have internal shaking I call it internal vibrations I am going to see a movement dr at u of m

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@oakbourne

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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thank you see my post to you I am being referred to a movement dr au u of m😊

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@cathy514

I just got referred to a movement dr by a u of m dr I seen for the pinched nerve in my neck, he say not anxiety as pcp it is move ment disorder he will be operating on my pinched nerve and revering me to movement dr

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@cathy514 – glad things are moving along to help you. When is your movement doctor appointment? When will your operation be on the pinched nerve?

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@lisalucier

@cathy514 – glad things are moving along to help you. When is your movement doctor appointment? When will your operation be on the pinched nerve?

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waiting for u o m to call with dates

Liked by Lisa Lucier

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