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calical
@calical

Posts: 3
Joined: Sep 01, 2018

Monthly shaking episodes that continue to progress

Posted by @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

REPLY

I was told to get a toxic metal test due to MRI with contrast but no dr I have seen will do the test they say it's not available my eyes are so dry from insomnia? I had to have tear duct implants anyone know how or where to get a toxic metal test?

@oakbourne

Look up Dystonia. There are at least two support groups that may help you.One is DMRF. You may need Botox and sometimes if you can't pay, they will help you. My aim is to help everyone with this monster disease. I've had it all my life. Support group are great too. Check this out through DMRF and there may be a support group in your city and state. Good luck, Dorothy

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I cannot find the support groups can you send a link tonthem

@cathy514

Hi Lisa, and thank you, I can't find any neuralrologist move ment disorder at Clinton Michigan mayo clinic and can't connect with the conversation links my cognitive level is very low can you help me

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@cathy514

Have you had an opportunity to check out the locations of Sparrow Hospital yet? It is a Mayo affiliated hospital system in Michigan, which means that Sparrow Hospital can consult with Mayo doctors.

Do you have a friend, relative, or church that can help you make calls or help you find a Sparrow facility? Perhaps you can get an appointment earlier than January.

@hopeful33250

@cathy514

Have you had an opportunity to check out the locations of Sparrow Hospital yet? It is a Mayo affiliated hospital system in Michigan, which means that Sparrow Hospital can consult with Mayo doctors.

Do you have a friend, relative, or church that can help you make calls or help you find a Sparrow facility? Perhaps you can get an appointment earlier than January.

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I found it online but no option for nerve damage or movement disorder it was in Clinton Michigan which would be out of network for my insurance but I would like to find a dr there ii couldn't find neuro dr at all

@cathy514

Hi Lisa, and thank you, I can't find any neuralrologist move ment disorder at Clinton Michigan mayo clinic and can't connect with the conversation links my cognitive level is very low can you help me

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Hi, @cathy514 – one suggestion I make to members often is to click on VIEW & REPLY in any email from Mayo Clinic Connect notifying you about responses in this discussion (or any other conversation on Connect in which you are participating). If you do so, you will see the whole discussion and can join in, meet, and participate with other members talking about their or their loved ones' experiences. It gives you a lot more context.

@cathy514

I was told to get a toxic metal test due to MRI with contrast but no dr I have seen will do the test they say it's not available my eyes are so dry from insomnia? I had to have tear duct implants anyone know how or where to get a toxic metal test?

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@cathy514 – some of the members in this discussion, "Seizures and amalgam fillings – mercury" may also have information and thoughts for you about getting toxic metal tests https://connect.mayoclinic.org/discussion/seizures-and-amalgam-filings-mercury/?pg=1#comment-240808.

@cathy514

I an beginning to think if you don't live by a mayo clinic and don't have out of state coverage there is no resolve I don't know where or how to get help and living this way is miserable and yes Drs dismiss me as psyciatric but psychiatric meds make me worse and may have been the cause from what I have read I just don't know what to do I have horrible tinnitis I need a good ent I am so tired of Drs saying its depression or anxiety without testing I would not be depressed if I could get better even the therapist says he thinks it's some kind of nerve damage or from back epidural as insomnia began 1 day after spine epidural for I joint dysfunction he said contact mayo but I am not financially able to fly to another state get accomadations and pay mayo any suggestions I am desperate for help I want my life back so badly, I am stuck in the house due to embarrassment and pain, I can only drive short distances my left arm goes numb all day every day I have exhausted all rides to the Drs I don't know what to do next, I am praying u o m can help me but that's months away

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OH MY GOD! Psychiatric medications cause Dystonia. Haldol and some other psychiatric meds caused a friend of mine in my Dystonia support group to have horrible tremors, his back was all messed and his head was retro and he was a right looker. He was all messed up and in severe pain and shaking. Throw them away forever! Don't touch em! They are poison.

@cathy514

thank you Dorothy I don't have any relatives with even a similar condition this all started after a fall on ice and hip arthoscopy, was given Zoloft for depression and trazadone and when it didn't work lunesta for insomnia which began after a back epidural , I have a low tolerance to medicines and many side effects but no one seems to be able to help me I have a Bachelors degree and can't write spell , I wake up every morning shaking internally and externaly and teeth rattle sometimes stuttering hands shake the worst and I feel sick to my stomach feeling something is wrong but can't get diagnosed

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Cathy, trauma can cause Dystonia. I have spoken to many people who have Dystonia and they said it was from a fall, car accident and other mishaps. They too said it did not run in their family. Blacks don't get this disease unless they have a trauma event. I am hoping for God's Sake you don't have Dystonia, but it sure sounds like Dystonia. Many doctors don't know what it is, so don't waste your valuable time with them. I wish you could see Dr. Arce. People far and wide see him from America, Australia, England and other countries. He's the expert on Dystonia all across the country and world. I know he could help you. I adore him.

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

Hi @calical
Have you been familiar with the consequences of being a patient with high blood pressure or low blood pressure. I might wrong, but you can test it by getting blood test and become familiar the effect of both L.@ H. on the measurement of the red blood cells ( and that need a specialist doctor such as cardiac or…. ) that is not a decision for you to go for it, but is my point of view. wishing you to get well soon!
Amani

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.

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

@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

@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

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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