I would like to offer a thought and ask a question.
First, a thought on the nature of this wonderful (cough, cough) companion. Recently I was asked by a dear friend to describe what I am going through since from the outside it seems very random from one moment to the next what I am experiencing. I thought about it and offered this illustration…it is like the ocean at a beach. The waves roll in and the waves roll out. The tide is high and the tide is low, sometimes the tide is oddly low and sometimes it is devastatingly high. Sometimes the waves are insignificant, sometimes they are destructive. Sometimes the movement of the water takes things from the beach and sometimes it leaves things for you. That is what living with this condition is like, it is not always something to be reckoned with…but it is always there and it is always moving. At least, that is the way it is for me. How does everyone else explain life with Eagles to others?
Now, a question. Am I going crazy or is my face twitching and my vision going double? I have searched and found the posts that others have made on these two topics, and given my illustration above you would think I would accept this as just another day with Eagles, but sometimes when new things happen I do question myself. Am I crazy? Am I neurotic? Are the changing symptoms simply a movement of “things” or is the condition progressing and getting worse?
Ok, I realize that was way more than one question, but I think in general I am just needing reassurance. Thank you (LWE community) for just being here for me to express this to.
I LOVE your visual description of what life w/ ES is like! Very AWESOME & really accurate!! Thank you for sharing that. When I was struggling w/ ES, no one ever asked me what it was like. I think my family got annoyed w/ me for commenting about my pain some days, but they never called me a hypochondriac or made any inference that I was just attention seeking.
You ARE NOT going crazy. Face twitching & visual changes can be ES symptoms. Often visual changes go along w/ vascular ES, but they can also be related to trigeminal nerve &/or facial nerve irritation by an elongated styloid. Since none of the other symptoms you’ve mentioned seem to point to VES, I’m guessing those symptoms are nerve related.
Like you, I had new symptoms appear periodically. Sometimes they became chronic & others they settled into the background & let other pains, twitches, palpitations dominate. Because there are so many tissues that can be affected by ES, it seems that the variety of symptoms it can cause is almost endless. Yes, ES can be progressive. I did find after my first styloid was removed, not only did the symptoms my remaining styloid was causing ramp up, but new symptoms added on. It was a huge relief to get that remaining styloid removed nearly 9 mos. later. I had one oddball symptom that I think only one other person on this forum has mentioned - periodically the roof of my mouth would feel like I’d just poured scalding water on it. I would fully expect to feel blisters forming at any moment but none ever did. The sensation would last for an hour or two then go away. That stopped after my second styloid was removed.
Great description! I just got asked ‘Eagles Syndrome- does that mean you’re going to sprout wings?’, so didn’t say too much about it to anyone other than my husband! I’m glad you have a friend who cares…
Although the symptoms do come & go & most experience flare-ups, there generally does seem to be a progression, so I don’t think you’re being neurotic! It does make you question every symptom/ strange sensation, I remember that well, sending you a hug
