Need help with Episodes
 

I had a concussion in mid July of this year. For about a month afterwards I would have upwards of 100 episodes a day of involuntary muscle movement and speech problems, as well as occasional confusion.

The past two months have been clear and my doctor OK'd me biking. I have had no problems biking until today, about two hours after they flared up again.


I had an MRI, CT, and EEG. My neurologist said it wasn't seizures and that they were called episodes but didn't give me any direction or anything.

Can I please have some advice on what is happening, why, and if there is anything I can do to help them?

Video of it in action: https://www.youtube.com/watch?v=gcni3gCLWVA

The URL did not work, but no linking until you have the required # of posts. Sorry.

If you can describe your episodes that will help members to relate.
What happens, when it happens, how long it lasts, etc.

Do you think it is related to the concussion, or not fully certain?
Anyone in family have anything like it at all?

Milk_Shake,

Welcome to NeuroTalk. I've never heard of movements as extreme as yours. How hard were you riding ? Did you mean the episode started 2 hours after your ride ?

How did you get your concussion ? How bad was it ?

They may be what is called tics. I had tic movements early on too but was put on a med that helped. Jarring my head can trigger the movements.

I thought mine were seizures at first.

What are your movements like?

My episodes tend to be different at different times.

It's mostly involuntary flexing movements of either my hands and arms, face, or my chest and back.

It can be only one of them, a couple but not all, or all at once.


Sometimes during I will become limp in either of those but that's rarer. I will not be able to lift my head up for example. Or my hands will have trouble holding things or typing.

I never lose contentiousness but sometimes if the episode is really bad I'll get blurry and double vision and get dazed and confused. I'll forget where I am mostly.


They can last for seconds, minutes, and sometimes go on for hours, which is what's happening today. I was on hour 2 when I made the video.

They can be neck related I've read and can be treated with proper care-upper neck chiropractor specialist and pt.

Are the movements worse when you lay down or are trying to fall asleep?

As for the concussion I went to the ER the day after I crashed. The reason why I went to the ER was because of these symptoms and they diagnosed me as having post concussion syndrome. I got a CT that day because my speech was slurred and my memory was completely shot. It came back negative for bleeding or a stroke.

After that I went to my doctor to get a referral to a neurologist. She had me take an MRI and EEG when my episodes weren't going away and were starting to get worse.

They came back negative.

Could be dystonia or tics. I was misdiagnosed with dystonia at first.

Look them up. There are videos of other people with each of the conditions.

How are your other symptoms?

Certain meds called anti ecliptic scan help with these things. I took topiramate.

It is possible to acquire tics after brain injury.
One example from PubMed below...

http://www.ncbi.nlm.nih.gov/pubmed/21534741
Brain Inj. 2011;25(6):629-33. doi: 10.3109/02699052.2011.572944.
Tics after traumatic brain injury.
Ranjan N1, Nair KP, Romanoski C, Singh R, Venketswara G.
Abstract

However, you describe slurred speech, confusion, memory problems and going limp.
Were you having the movements when you had the EEG?
Did they suggest an ambulatory EEG? That's one you can move around with and take home and it monitors you over a much longer period of time.

Wow, yeah. That does cover a lot of the problems I am experiencing.


I had an uncle that my mom said would have epileptic seizures but only if he was really fatigued and stressed. I wonder if my mom misunderstood and it was this.


How would I go about approaching my doctor and do you know how such a thing is tested?

I were having those movements when I was on the EEG. No, the doctor seemed quick to get me out. I brought up that I was using an illicit substance to help quell the episodes (I think honesty is the best policy). She was not impressed and told me it should not and would not work. She kept saying that they weren't seizures and the ways I was moving (They video taped me) was not indicative of seizures, epilepsy, or brain damage. She didn't give me any information other than that and had me sent out.

Should I go about finding another neurologist?

Well, that's up to you. If they're not "seizures, epilepsy, or brain damage" yet you have all these other symptoms as well as the movements e.g. confusion, memory problems, double vision, going limp and losing strength in your hands, then I'd be looking for another opinion personally.

Please check your Private Messages. I just sent you one.

from the FAQ - about private messaging

I have sent you an e-mail with the link.


On the note of my Uncle, he was just epileptic. Grand mal Seizures. So I guess it being Dystonia from genetics may be off the table.

On the note of it being Tics though, my mom remembered for me that when I was a kid I had to stop taking Adderall because of Tics in my face that began to show up.

Could that mean I might be more susceptible to tics?

Yes, it is possible for people to have a genetic predisposition and the Adderall can either bring them out or exacerbate them. That is not uncommon.

Many little children have tics that are very mild as well and not noticed unless the viewer is accustomed to various tic manifestions.

I've been doing some reading on dystonia and tics. I'm trying to wrap my head around it. I think I've got this right but I'm not sure.

Tics are any kind of involuntary muscle spasm unrelated to seizures and epilepsy.

Dystonia are a group of tics that manifest in a specific way?

Or is it a separate disorder different than tics?

It's all very complicated, but Dystonia is different from tics although there are tics that are called dystonic tics too. Dystonic tics are slower and more contracted tics than simple motor tics.

Leckman and Martino talk about this in one of their books.

Distinguishing Tics from other types of Movements

Have to dash. Will post better info. later if I can.

The episodes haven't gone away with a nights rest. I've got a ride to get a second opinion. Gonna set an appointment in person. Feel's kind of slimy to go in person to try to get a faster booking. I suppose this isn't your typical cold though.



The movements are not worse when I lay down and sleep. They tend to get better. Though they do still happen.



-edit- Oh, hey, look at that. 10 posts.

Have a video. https://www.youtube.com/watch?v=gcni3gCLWVA

Went to the doc's to get an appointment and they sent me straight to the ER thinking I had a stroke. At the ER though the doctor confirmed it was dystonic tics. He thinks it was brought on by coffee I had the previous day.

Is it common for coffee induced episodes to start 6 hours after drinking it and to continue through to the next day?



Anyways I have prednisone and OTC benadryl. Seems to be helping a little bit but not that much.


-edit the benadryl has not helped at all I took a single 25mg dose

wow, so it sounds as if you've got a couple of different things going on at once. All very confusing.

Did the ER Doctor suggest that this was a reaction to coffee?

What about the episodes in July. Did they say dystonic tics, acute dystonic reaction or dystonia?

Maybe some of the other symptoms are unrelated then.

What was the Prednisone prescribed for in the ER? Did they say?

I was under the impression that Benedryl would work really fast if it was going to work. Hopefully you'll notice some difference over the day though.

https://www.dystonia-foundation.org/...n-drug-induced

If I was you I'd not drink any more coffee or any other substances that might possibly be the cause of this type of reaction.

In July the neurologist didn't give me a diagnosis. The neurologist just told me it was not seizures and that they were called episodes. That's all the information I got from her. All of my diagnosis papers say "Post concussion syndrome." The entire time they were testing for tonic and atonic seizures


What I talked to the ER doctor about was the symptoms that I listed. He said that they sounded and looked spot on for dystonic tics. Recommended me to a neurologist to have them looked at further. He prescribed me the steroids then but said he couldn't help further. He didn't say why.

The ER doctor did not know about the caffeine. I forgot about drinking coffee that day. The last nurse that asked me a bunch of questions, asked me, "If I took any possible drug." Caffeine was one of them, which reminded me. She is the one that told me that it was likely due to that. She recommended the same neurologist as the ER doctor. I was given discharge papers shortly after. The discharge papers say "Dystonic Drug Reaction"

I did not talk to the ER doctor after that nurse left and was released shortly after the nurse left.


-editors note- I re-read my posts and I got some information wrong in the timeline and who said what. I've made sure this version is as right as it can be.



I won't drink any caffeinated drinks, even soda. Definitely not worth it.