Facial fasiculations and drooping eyelid

Posted by bumble81 @bumble81, Sep 11, 2019

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.

@bumble81

Had to cancel because my kids was sick. lol

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@bumble81

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

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@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:(

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

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@lisalucier

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

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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.

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@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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Hello – sorry for the late response but I also have the twitching on my right side. The Neurologist said it was Hemifacial Spasms. I have had Botox several times to see if this calms it down – the other option was surgery. I’m not sure what caused this – it’s very frustrating.

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@michelles123

Hello – sorry for the late response but I also have the twitching on my right side. The Neurologist said it was Hemifacial Spasms. I have had Botox several times to see if this calms it down – the other option was surgery. I’m not sure what caused this – it’s very frustrating.

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Hi. I started with Botox because the first neurologist never gave the diagnosis but said options were invasive surgery or Botox. I found Botox to be only a band aid approach and tried physiotherapy because I thought the pinched nerve could be moved . Once off Botox and physiotherapy not working, my twitches were awful and very distracting,with my eye shutting frequently. I was referred to a new neurologist who immediately diagnosed me with HFS, explained what it was and the surgery. So I went with the surgery because it can actually fix the problem. Now, 5 weeks post surgery I notice a huge improvement although if I am tired or after reading a lot twitches occur and I have nausea off and on . January 2 I see my neurosurgeon to learn how long it takes to fully recover.

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@jmh

Hi. I started with Botox because the first neurologist never gave the diagnosis but said options were invasive surgery or Botox. I found Botox to be only a band aid approach and tried physiotherapy because I thought the pinched nerve could be moved . Once off Botox and physiotherapy not working, my twitches were awful and very distracting,with my eye shutting frequently. I was referred to a new neurologist who immediately diagnosed me with HFS, explained what it was and the surgery. So I went with the surgery because it can actually fix the problem. Now, 5 weeks post surgery I notice a huge improvement although if I am tired or after reading a lot twitches occur and I have nausea off and on . January 2 I see my neurosurgeon to learn how long it takes to fully recover.

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Thank you for input! Good luck on Jan 2nd. Keep me posted. Happy New Year!

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Thanks. In my research of HFS the cause seems to be a few things so that was why an MRI ruled out MS or a tumour . My surgeon said it could be caused from a previous neck injury as well. I found researching it helps as it is à fairly new disorder

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@jmh

Thanks. In my research of HFS the cause seems to be a few things so that was why an MRI ruled out MS or a tumour . My surgeon said it could be caused from a previous neck injury as well. I found researching it helps as it is à fairly new disorder

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I have headaches since back surgery in 2006. The HFS just started last year.

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