Facial fasiculations and drooping eyelid

Posted by bumble81 @bumble81, Wed, Sep 11 10:21am

Last April I started to notice my left upper eyelid was moving a lot more than what I think is normal. But I ignored it. Now the muscles below my left eye and down my cheek are firing off nonstop. It's very obvious to those around me. Also, my left eye has started to droop randomly off and on. I managed to get photos and videos this time.

Hello everyone,

There has been a sort of strange turn of events. I recently went to see my neurologist about this new weird symptom I am having. The last year has been nuts and I have had hundreds of strange unexplained episodes that have landed me in the hospital on numerous occasions. I was diagnosed with having refractory panic disorder and pretty much left to my own devices. Nothing helped. Then I recently started having twitching all over my body and most notably on my face under my left eye.

Turns out I have Focal Onset aware seizures, what used to be called Simple Partial Seizures. I may also occasionally complex partial seizures. Those are the ones that cause me to become unaware or mostly unaware, urinate myself, lose time and become incredibly confused and agitated, lose my hear in my left hear and smell things that are not there. This has happened on 3 occasions in the last 12 months:(

So that is what I know at this point.

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@bumble81

Hello everyone,

There has been a sort of strange turn of events. I recently went to see my neurologist about this new weird symptom I am having. The last year has been nuts and I have had hundreds of strange unexplained episodes that have landed me in the hospital on numerous occasions. I was diagnosed with having refractory panic disorder and pretty much left to my own devices. Nothing helped. Then I recently started having twitching all over my body and most notably on my face under my left eye.

Turns out I have Focal Onset aware seizures, what used to be called Simple Partial Seizures. I may also occasionally complex partial seizures. Those are the ones that cause me to become unaware or mostly unaware, urinate myself, lose time and become incredibly confused and agitated, lose my hear in my left hear and smell things that are not there. This has happened on 3 occasions in the last 12 months:(

So that is what I know at this point.

Jump to this post

@bumble81
Sorry to hear your having seizures. Has your Neuro mentioned that you have Temporal Lobe Epilepsy?
I have Generalized Tonic Clonic Seizures myself but have had some Focals.
What happens when you have your Focal Impaired Seizures? Those can be really dangerous. I walked onto a hi-way and nearly walked into the Grand Canyon. What meds are you taking?
Have you had an MRI and EEG?
In case your not aware there is a seizure section on Connect. Here is a link,

https://connect.mayoclinic.org/group/epilepsy-2bb359/?utm_campaign=search

Best of luck,
Jake

REPLY
@jakedduck1

@bumble81
Sorry to hear your having seizures. Has your Neuro mentioned that you have Temporal Lobe Epilepsy?
I have Generalized Tonic Clonic Seizures myself but have had some Focals.
What happens when you have your Focal Impaired Seizures? Those can be really dangerous. I walked onto a hi-way and nearly walked into the Grand Canyon. What meds are you taking?
Have you had an MRI and EEG?
In case your not aware there is a seizure section on Connect. Here is a link,

https://connect.mayoclinic.org/group/epilepsy-2bb359/?utm_campaign=search

Best of luck,
Jake

Jump to this post

She has not mentioned much and we still need to do an EEG, this is all very preliminary. There are some lesions that show on the MRI but she is not sure if they are related. She is actually going off a video I captured last month.
My episodes start with either an unusual smell or sensations. then followed by sudden extreme fear. Sometimes I jump up and start randomly walking but they do not last very long, maybe 30 seconds to a minute but sometimes I have them multiple times a day and I wake up in the night with them feeling like I am spinning. It's very very strange and hard to explain everything I am feeling.
Unfortunately these short episodes are sometimes followed by much stronger attacks that leaves me incapacitated, disoriented, unable to make sense of my surrounding and overwhelmed with a host of physical sensations. I once even urinated on myself and another time fell out of the shower and was hauled out of my house buck naked in the dead of winter by EMT. Fun times:(

REPLY
@bumble81

She has not mentioned much and we still need to do an EEG, this is all very preliminary. There are some lesions that show on the MRI but she is not sure if they are related. She is actually going off a video I captured last month.
My episodes start with either an unusual smell or sensations. then followed by sudden extreme fear. Sometimes I jump up and start randomly walking but they do not last very long, maybe 30 seconds to a minute but sometimes I have them multiple times a day and I wake up in the night with them feeling like I am spinning. It's very very strange and hard to explain everything I am feeling.
Unfortunately these short episodes are sometimes followed by much stronger attacks that leaves me incapacitated, disoriented, unable to make sense of my surrounding and overwhelmed with a host of physical sensations. I once even urinated on myself and another time fell out of the shower and was hauled out of my house buck naked in the dead of winter by EMT. Fun times:(

Jump to this post

@bumble81
Weird things can happen alright. My friend in
Birmingham, England had a Focal Impaired and took off all her clothes in McDonalds.
If your Neuro is planning a regular 20-30 minute EEG I would stay up all night the night before your EEG to help you have some seizure activity. Hopefully you’ll go to sleep during the test. When you fell out of the shower, was that a Tonic Clonic seizure?
Take care,
Jake

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@jakedduck1

@bumble81
Weird things can happen alright. My friend in
Birmingham, England had a Focal Impaired and took off all her clothes in McDonalds.
If your Neuro is planning a regular 20-30 minute EEG I would stay up all night the night before your EEG to help you have some seizure activity. Hopefully you’ll go to sleep during the test. When you fell out of the shower, was that a Tonic Clonic seizure?
Take care,
Jake

Jump to this post

I don't know what type of seizure is was but I do not before that happened I was having a cluster of episodes back to back and then bam, it was like I was run over by a truck. My memory is really fuzzy, I remember feeling like everything was moving around me. I recall the doctor trying to get me to respond to him and I could not talk. I was out of it.

Liked by Leonard

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One thing I am starting to wonder about is an event that happened in May of 2017. I was kicked in the head by a horse. Can't help but wonder if this might somehow be related.

Liked by Leonard

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@bumble81

One thing I am starting to wonder about is an event that happened in May of 2017. I was kicked in the head by a horse. Can't help but wonder if this might somehow be related.

Jump to this post

@bumble
Of corse I wouldn’t know for sure but damage to any area of the brain may trigger seizures and eventually epilepsy.
I believe my seizures may have been caused when a friend (?) hit me in the head with a baseball bat. Although they didn’t start till years after that.
I wonder if any of the abnormalities on your MRI are a result of that incident.
Regardless if your diagnosed with Epilepsy or not it obviously apparent your having seizures. Your probably aware that certain activities should be avoided, driving unless seizure free for 1 year or whatever your states requirement is. I’m in California and it’s 1 year here but exceptions are sometimes made depending on circumstances. I’m hoping for an exception on my drivers license upcoming
re-evaluation. I forgot to take my medicine which is a rare occurrence. Also, you should only take showers while sitting. If money is no object installing temperature controls would prevent accidentally moving the control to hot (depending on the type of control) and potentially causing burns. 5% of all drownings are seizure related. 60% of people who drown with Epilepsy die in the bathtub. Like me you may never know the cause of your seizures. 75% of Epilepsies are Idiopathic.
When is your next Neuro appt?
Jake

REPLY

@bumble81
I just read your posts on the first page. Are you constantly having breathing and swallowing problems? How often are your facial twitches? What was the ER doctors diagnosis that night you went? What part of your body did you show the Neuro? Did you & the Neuro only talk about your facial twitches or did you talk about your other neurological symptoms as well?
Jake

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@bumble81

Hello everyone,

There has been a sort of strange turn of events. I recently went to see my neurologist about this new weird symptom I am having. The last year has been nuts and I have had hundreds of strange unexplained episodes that have landed me in the hospital on numerous occasions. I was diagnosed with having refractory panic disorder and pretty much left to my own devices. Nothing helped. Then I recently started having twitching all over my body and most notably on my face under my left eye.

Turns out I have Focal Onset aware seizures, what used to be called Simple Partial Seizures. I may also occasionally complex partial seizures. Those are the ones that cause me to become unaware or mostly unaware, urinate myself, lose time and become incredibly confused and agitated, lose my hear in my left hear and smell things that are not there. This has happened on 3 occasions in the last 12 months:(

So that is what I know at this point.

Jump to this post

Hi, @bumble81 – glad you are connecting with @jakedduck1 about the seizures you are describing.

I also wanted to point out some information that may be useful on focal seizures on this Mayo Clinic page on seizures https://www.mayoclinic.org/diseases-conditions/seizure/symptoms-causes/syc-20365711

Liked by Leonard

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@bumble81

Had to cancel because my kids was sick. lol

Jump to this post

@bumble81

I hope that your follow up appointment goes well. Will you post again when you see your doctor?

Liked by Leonard

REPLY
@bumble81

She has not mentioned much and we still need to do an EEG, this is all very preliminary. There are some lesions that show on the MRI but she is not sure if they are related. She is actually going off a video I captured last month.
My episodes start with either an unusual smell or sensations. then followed by sudden extreme fear. Sometimes I jump up and start randomly walking but they do not last very long, maybe 30 seconds to a minute but sometimes I have them multiple times a day and I wake up in the night with them feeling like I am spinning. It's very very strange and hard to explain everything I am feeling.
Unfortunately these short episodes are sometimes followed by much stronger attacks that leaves me incapacitated, disoriented, unable to make sense of my surrounding and overwhelmed with a host of physical sensations. I once even urinated on myself and another time fell out of the shower and was hauled out of my house buck naked in the dead of winter by EMT. Fun times:(

Jump to this post

Hi, @bumble81 – how are you doing? Will you be having the EEG soon that you mentioned you will need?

Liked by Leonard

REPLY
@lisalucier

Hi, @bumble81 – how are you doing? Will you be having the EEG soon that you mentioned you will need?

Jump to this post

Good morning everyone. I have not had my EEG yet. I wont have it until November 13th and then I wont follow up until January 6th. They are very busy unfortunately.

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@bumble81

Good morning everyone. I have not had my EEG yet. I wont have it until November 13th and then I wont follow up until January 6th. They are very busy unfortunately.

Jump to this post

@bumble
My suggestion for your EEG is to stay up the night before. Sleep deprived EEG’s increase chances of ictal (seizure) activity.
EEG’s are normal about 29-55% of the time. Longer recording times than the usual 20-30 minute tests usually done increases the chance of seizure activity 30% of the time.
Jake

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Wanted to update you all. I have not had my EEG as of yet but I may have accidentally figured out what is going on with me. The other night I caught a show on CNN about Benzos. I was on a Benzo for months and went off cold turkey about 7 months ago. Everything I have gone through since can be explained by benzo withdrawal. Right down to the fasciculations. Good news is that I am absolutely getting better as time goes on. I really had no idea that was what my problem was.

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