1. < Brain & Nervous System

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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Moderator
Lisa Lucier, Moderator | @lisalucier | Nov 4, 2018
In reply to @cathy514 "what if you don't live near a mayo clinic and bcbs of Michigan won't cover out..." + (show)
@cathy514

what 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

Jump to this post

Hi, @cathy514 - Being miserable for over a year is very hard. The tremors resembling Parkinson's; not being able to spell, add or subtract; and the difficulty writing must be very challenging.

Since you don't live near Mayo Clinic in AZ, MN or FL, you might check out the Mayo Clinic Care Network, which does have a member in Michigan: https://www.mayoclinic.org/about-mayo-clinic/care-network/members

I'd also like to invite into this conversation @hopeful33250 @pattywelch @kati612 @ggopher @susan62. I trust they may have some input on your situation, @cathy514.

Since you do have an appointment with University of Michigan in January and are feeling you could use help sooner, do they have a system whereby you can call and check in for any cancelled appointments or where you can sit in the lobby and be seen if someone does not show for an appointment?

REPLY
1 reply
oakbourne | @oakbourne | Nov 4, 2018
In reply to @cathy514 "what if you don't live near a mayo clinic and bcbs of Michigan won't cover out..." + (show)
@cathy514

what 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

Jump to this post

Contact DMRF and other movement disorder support groups. Some people who can't pay can be helped with Botox for free. Look up dystonia and you will find at least two movement disorder support groups. Hope that helps. I want to help everybody with this monster disease.

REPLY
oakbourne | @oakbourne | Nov 4, 2018
In reply to @cathy514 "there is a yahoo group that are getting some tests and help from mayo what if..." + (show)
@cathy514

there is a yahoo group that are getting some tests and help from mayo what if you don't have access to mayo?

Jump to this post

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

REPLY
1 reply
oakbourne | @oakbourne | Nov 4, 2018
In reply to @cathy514 "what if you don't live near a mayo clinic and bcbs of Michigan won't cover out..." + (show)
@cathy514

what 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

Jump to this post

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

REPLY
2 replies
oakbourne | @oakbourne | Nov 4, 2018
In reply to @cathy514 "omg I have had what I call internal vibrations that rarely go away, I was told..." + (show)
@cathy514

omg 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

Jump to this post

Cathy, doctors don't know everything. Some are quite bad. When a doctor does not know something, they call it psychological. It's all in your head, you need a man or you need sex. Yes, I've heard it all and it's demeaning and hateful. Sometimes they are ignorant and rude. Don't walk away, run away from them. It's not in your head. That's Neanderthal Thinking. Caveman talking!

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Mentor
Teresa, Volunteer Mentor | @hopeful33250 | Nov 4, 2018
In reply to @cathy514 "omg I have had what I call internal vibrations that rarely go away, I was told..." + (show)
@cathy514

omg 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

Jump to this post

Hello @cathy514

I appreciate Lisa, @lisalucier, inviting me to this conversation regarding your tremors. I can understand your concern about not getting in to see a U of Mich. doctor until January. I live in SE Michigan and I do see a couple of doctors at U of M and they will allow you to call back (even on a daily basis) to see if there have been any cancellations for an earlier appointment. As Lisa mentioned in her post, there are Mayo affiliated hospitals in Michigan. One of those is Sparrow Hospital and they have several different campuses. Here is a link to their website, https://www.sparrow.org/.

I have Parkinson's however, I'm in the rare 15% of PD patients who don't experience tremors, for which I'm thankful.

There are many causes for tremors, other than PD. So a good movement disorder specialist would be a good idea. Have you previously seen a movement disorder specialist? They are neurologists, but they have have special training in movement disorders like Parkinson's, etc. Has any doctor tried any meds to help with the tremors?

REPLY
oakbourne | @oakbourne | Nov 5, 2018

Hi Cathy, my mother had essential tremors as a teenager and I noticed it as a kid. Her hands would tremor whenever she got stressed or nervous. She told me she would hide her hands because of embarassment. I had it, but it went away. My problems are Spasmodic Torticollis along with Oral Mandibular problems. This disease can effect every muscle in the body. Have you checked to see if anyone in your family has this disorder - mother, father, grandparents, greatgrand parents, cousins, and any other family members way back? It only has to take one parent to pass this monster on to you. Whenever my MOM got nervous, she would light up to smoke or get gum to chew. Her hands would tremor when nervous. She would talk non-stop because it relaxed her muscles in the oral cavity. She had the oral mandibular problem plus her hands shook badly. All ten of my aunts and uncles had this monster. I always thought "why are my reatives so nervous?" They could not help it. It was the DYT1 gene!! This is totally genetic on my part. I'm related to the famous Ted Tuner and his foot would pop up when stressed. My cousins have essential tremors also. Check out your realtives. Hope I have helped you any way. Dorothy

REPLY
1 reply
cathy514 | @cathy514 | Nov 9, 2018
In reply to @lisalucier "Hi, @cathy514 - Being miserable for over a year is very hard. The tremors resembling Parkinson's;..." + (show)
@lisalucier

Hi, @cathy514 - Being miserable for over a year is very hard. The tremors resembling Parkinson's; not being able to spell, add or subtract; and the difficulty writing must be very challenging.

Since you don't live near Mayo Clinic in AZ, MN or FL, you might check out the Mayo Clinic Care Network, which does have a member in Michigan: https://www.mayoclinic.org/about-mayo-clinic/care-network/members

I'd also like to invite into this conversation @hopeful33250 @pattywelch @kati612 @ggopher @susan62. I trust they may have some input on your situation, @cathy514.

Since you do have an appointment with University of Michigan in January and are feeling you could use help sooner, do they have a system whereby you can call and check in for any cancelled appointments or where you can sit in the lobby and be seen if someone does not show for an appointment?

Jump to this post

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

REPLY
2 replies
cathy514 | @cathy514 | Nov 9, 2018
In reply to @oakbourne "Hi Cathy, my mother had essential tremors as a teenager and I noticed it as a..." + (show)
@oakbourne

Hi Cathy, my mother had essential tremors as a teenager and I noticed it as a kid. Her hands would tremor whenever she got stressed or nervous. She told me she would hide her hands because of embarassment. I had it, but it went away. My problems are Spasmodic Torticollis along with Oral Mandibular problems. This disease can effect every muscle in the body. Have you checked to see if anyone in your family has this disorder - mother, father, grandparents, greatgrand parents, cousins, and any other family members way back? It only has to take one parent to pass this monster on to you. Whenever my MOM got nervous, she would light up to smoke or get gum to chew. Her hands would tremor when nervous. She would talk non-stop because it relaxed her muscles in the oral cavity. She had the oral mandibular problem plus her hands shook badly. All ten of my aunts and uncles had this monster. I always thought "why are my reatives so nervous?" They could not help it. It was the DYT1 gene!! This is totally genetic on my part. I'm related to the famous Ted Tuner and his foot would pop up when stressed. My cousins have essential tremors also. Check out your realtives. Hope I have helped you any way. Dorothy

Jump to this post

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

REPLY
2 replies
cathy514 | @cathy514 | Nov 9, 2018
In reply to @cathy514 "thank you Dorothy I don't have any relatives with even a similar condition this all started..." + (show)
@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

Jump to this post

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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