ES & Mycolnus/Seizures

Wondering if anyone has experienced seizures and/or general myoclonic symptoms with their ES? I have been experiencing myoclonus which wakes me up multiple times during the night. I had a seizure on the weekend in the emergency department but apparently it was a “psuedo-seizure” attributed to “sleep deprivation” - was told to take a valium and get a good night’s sleep :frowning: I’m wondering if this could be related to the styloid ligament pressing on the cranial nerves or carotid/jugular artery when lying down? I am sleeping on a wedge and two pillows currently because elevation seems to reduce the symptoms but not eliminate them. Interested whether anyone else has experienced similar problems.

Hi Angelmum,

There have been people who’ve experienced myoclonus w/ ES. Search posts by Ear Mom &/or send her a private email (How to Use this Site - tab in upper left of this page will tell you how to do that). Her son had ES symptoms at a very young age (10 yrs old or younger?) & had myoclonus among other severe symptoms. Her journey in finding a diagnosis for him resulted in her writing a book - Connecting the Dots by Sherry Jonas (available on Amazon). I don’t recall if he had seizures, but I wouldn’t be surprised if he did. Severe vascular symptoms are scary, & I a few people have had stroke-like symptoms from vascular compression. It makes sense that in an extreme case, seizures could occur. If I were you, I’d get a doctor appt ASAP to talk about what happened in the ER.

I’m glad you find the wedge pillow set up helpful. You could also start evaluating your head position to see if different positions make the symptoms worse or better.

Unfortunately, the ES surgeons in your country are few & far between. Make sure you feel fully confident in whomever you choose. I advocate external surgery (through the neck) so the greatest amount of styloid can be removed (ideally it gets cut back to the skull base) & the stylo-hyoid ligament as well. This helps in preventing a recurrence of ES. I sure hope you’re able to be taken care of soon. :blush:

Please keep us posted as to what you learn from your doctor.

Yes a couple of members have & it’s been mentioned in discussions; if you search for seizures they’ll come up. One member Mark7b posted a discussion a while back.
As well as a wedge pillow, I used a V shaped one, that helped take the pressure off the sides of my neck as well as I’d get worse vascular symptoms otherwise.
That sounds really scary, I hope you can get some treatment soon…