Non-epileptic Seizures

Undiagnosed as yet. I've been sick for 20 years and am receiving social security disability benefits. I have a mild sore throat, but nothing severe. There are pills I can't swallow, (they just bounce and float and hurt going down) and non-epileptic seizures when I turn my head left or right. And a lot of confusion and fatigue.

My seizures begin with aphonia or difficulty speaking. They progress to shaking, especially my head. It feels strangely uncomfortable; the closest feeling might be the feeling you get when you hold your breath, but it's hard to say for sure. I also have difficulty walking forward; walking in reverse is easier. Talking while inhaling is also easier for me. I once went 3 months without being able to speak normally. Adult-onset aphonia is largely considered psychological, and I gave that a lot of consideration for many years. Not so much lately, but it does give one pause to think.

I've got appointments in the next 17 days, (TMJ specialist and an ENT surgical consult) and I for sure am going to get a second opinion. Dr. Samji in San Jose, California looks very popular in this group. My question is this: How unusual are neurological deficits, like mine. I can't find any mention of non-epileptic seizures in the literature for ES, but I'm hoping some of you might have greater insight than Wikipedia. I'm quite used to having an elusive diagnosis. 20 years is a long time to wonder. So please don't hesitate to tell me I'm off-base. I can take the truth. I've learned to deeply question everything about myself. But I'm beginning to hope that this may be the right direction for me, and my styloids may be pressing on a nerve sending noxious input or reflexes from my auricular temporal nerve to deep in my brain. I'm guessing I'm not losing blood flow to my brain, because I'd see visual disturbances, (stars) wouldn't I? I'm guessing here.

One thing I'm quite sure about is that turning my head brings on my symptoms, and I was so very pleased to learn that I'm not alone with having a trigger such as this. Yea. Yippee. That's a very nice feeling. So, I'm going to enjoy that for as long as possible. Thank you very much. I'm coming in from out of the cold, and hoping to enjoy your warm fire for as long as it seems appropriate. Thank you very much. :)

Wow; sounds like you've been through the mill! Welcome to the site; we are certainly used to a wide array of symptoms, and to being rejected by doctors. You must be so strong to keep going.

The fact that turning your head brings on symptoms sounds like a lot of ES symptoms; either compressing nerves or blood vessels. You're obviously going to get medical advice, which we definitely can't help with, but I think from what I've read if turning a head compresses an artery, it can often cause blackouts, which is different to you. I have jugular vein compression by the styloids, which has caused some intracranial hypertension; I can't lay on my worst side or I get pounding in my head, which again doesn't sound like you have, and I get horrible feelings like I'm falling at times.

But others have had strange symptoms from vagus nerve compression, a lot of us have dizziness or balance problems which could be due to the nerves in the ear being affected, and loss of hearing or hypersensitivity to noise again must be due to nerve pressure. Swallowing difficulties and speech being affected can happen with ES, so it might explain some of your symptoms. I can't remember reading of any seizures like yours, but then so many people are misdiagnosed.... who knows?! And ES symptoms can come and go for no obvious reason too.

Have you had a CT scan or an MRI which would show elongated styloids? If not, that will probably be your next step. A lot of us can feel the styloids at the back of the throat, near the tonsils- you could always try to see if you can feel anything too? If you look in the past discussions section, there was a survey of symptoms done a while ago; you could look at that and see if there's anything you've missed; at least it'll make you feel less alone!

So good luck with your appointments- even if it doesn't turn out to be ES, we'll certainly all be thinking of you, and we definitely understand your battle!

God Bless.

FYI: was just reading a post on the Eagles Syndrome group on Facebook and they were talking about seizures

Sticking my tongue out also relieves symptoms.

I had neck surgery May 3, 2016 in Seattle, WA, USA. The left styloid looked okay and was left alone, but the left superior horn of my Adam’s apple was bent inward, poking in places it shouldn’t. My symptoms immediately improved. 15 days later, I’m able to turn my head with no problems. The surgeon has been tightlipped about the neurological symptoms saying, “neurology is not my area of the playground.”

I’m sleeping wonderfully. I can exhale with no weird symptoms. I suspect that soon I won’t need to nap. Maybe go back to work. I haven’t worked for 20 years. I’ll have to go to career guidance and get a vocational counselor because that’s a hard hill to climb. But I can now walk and talk normally. Wow! Who knew? Who knew? Oh, the humanity of it!!

The CT scan wasn’t clear enough to be sure if the problem was the hyoid or the adjacent cartilage, but I’m very thankful that the CT showed SOMETHING odd, because I doubt very much he would have been able to justify the expense. My symptoms were atypical.

That is fantastic news Mark! Just a shame it took so long for you to get help…
With regard to the hyoid bone, there have been a few members who’ve had surgery for elongated horns. I found this research, which is in the ES Info section, for other’s benefit:
‘Stylohyoid Complex Syndrome (SHCS was suggested by Candice C. Colby, MD; John M. Del Gaudio,MD in their paper ‘Stylohyoid Complex Syndrome- A New Diagnostic Classification’ on JAMA Network. As well as elongated Styloid Processes and calcified Stylohyoid ligaments they also suggested that elongated hyoid bone processes could cause tension and reduced distensibility of the SHC, irritating the surrounding cervical structures with movement of the complex).’

Mark, that’s such great news! Congratulations! Isn’t it weird how such a small bone can cause so much misery? Wow - being able to sleep again is huge. And good luck on going back to work. It’s so great to hear the success stories. Thanks for posting.

Hey Mark!
Please do not fear going back into the work force. Even though you think you have lost time, you have gained experience and empathy. Those two are invaluable in any field. I have had to “re-invent” myself after a long medical journey. I even scheduled surgeries around the final test while I was back in school. If you don’t mind me giving a little “learning” advice. I found that some studies on the human brain were really helpful. 1st you are way ahead of the game if you don’t think of your brain as a computer that can be crammed and later retain information. If you want short term info to go to long term simple don’t do anything that requires new muscle memory for 5 to 6 hours (including a new software program because of using a mouse). There’s a reason why people who go to night school do so well. They go to sleep after their lessons and most of the info goes into long term memory!. You are going to be great! I’ll be praying for you to find a good fit that is rewarding :slight_smile: