Dysautonomia (Autonomic Dysfunction) Community
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Avatar universal

I realize this sounds crazy.....

I have no idea what to refer to this as will anyone really take me seriously if I refer to my issue as having vibrating or trembling eyeballs? I am not kidding! As I get tireder,my muscles around my eyes begin to vibrate and shake and my eyes actually seem to quiver. It is the most horrible sensation to have. It is like a faint buzzing sensation from the top of my lip up into my eyes. If I look into the mirror the muscles are visibly shaking.  It reminds me of a horse when it shakes off a fly but it is a tinier movement and is continuous never ceasing.
  Does anyone else have this? What causes this? Is it something else with autonomic dysfunction?
18 Responses
875426 tn?1325532016
Not a dr., whom I feel you need to see for this, but here are my thoughts.  On the other thread, when you mentioned light flickers, I think of aura happening prior to migraine.  I've had flashing lights.  Here, though, I see you talk of shaking eye muscles & nystagmus popped into mind- you might look that up.  I obviously cannot diagnose & a dr. needs to do that for you.

The faint buzzing sensation, I think of possibly neurological in origin or muscle spasm, since when I had a kind of zzz tingle in a spot in my head, a neurologist told me my sensation was a muscle spasm.  Did you mention whether or not you've had an EEG lately?
Avatar universal
  Although I have smelled cigarette smoke which is my signal that a seizure is on the way, I have not gotten the other following feelings that complete the sequence leading up to my partial complex usual type seizures. I generally appear to not be paying attention to what is going on in the room and on ly if you know me well can you tell something is different with me. I can function IE talk or move during a seizure if I must but itwill bring on a angry response more often than not. Which having just said that makes me just go to myself Oh good heavens, because I know seizures do change occasionally, but driving to my moms apartment the other day I felt so odd and my eyes were doing the twitchy thing and  I felt very cross with her which is very uncharicteristic of me and I told myself to just cool it I was tired most likely and to keep my mouth shut. When we got to her apartment I lay down on the couch and slept immediately for about a hour woke upa and ate something and then went back to sleep for three hours. oh man this is not too good The only good thing is that we are going to the neuro monday and he is my neuro too so maybe I can get into see him soon. THank you for tweeking my mind, sometimes we live so inside our own heads that we dont see ourselves clearly. I do have nystygmus in the evenings especially.
  Used to be when my seizures first started up they were about eight in the morning. I had them when I was a kid as a result of a high fever, then I seemed to have grown out of them and then they returned with the lupus. when I was around 40. Have not had a EEG for a few years but they know I have had a positive EEG in the past.
Thank you Surgi.
875426 tn?1325532016
You're welcome- I hope you have someone willing to drive you and your mom for safety's sake while this eye thing is going on?
Avatar universal
absolutely during vibrating eye syndrome i see 8lanes instead of 4 lanes at times so it seems a good idea to have help thanks for the cerebral nudge. :)
Avatar universal
  I have not posted for a while as I have had a bad cold and have been trying to move my mom in to my house.
  The neuros office called and said they wanted to update me that they were having trouble making connections with the Dr as he is spending a lot of time at the hospital this last week and little time at the clinic.I told her what was going on in my life at the risk of sounding like a raving lunatic. She was very nice and said it was unfortunate they had more than there share of people that had spouses that were trying to prove in divorces there was nothing wrong with horribly ill people.She wondered what had happened to the line in the wedding vows in sickness and in health. I wonder too. My soon to be ex was here the other day and actually wanted me to look at his toe because he had dropped something on it. I am so dumb I looked at it It was horribly infected and black I told him to go to the Dr before he lost the toe.Can you imagine?
  I do have a appointment for the EMG testing on the 13th so that is something to go on.

  Twice in the last week I have had to hustle out of Walmart fast because there has just been too much happening. usually I can watch and if I see it getting busy I can check out and leave but now with my mom she moves slowly and it takes so long and I get caught in the rush and it has turned out poorly for me twice. My mom says she doesnt know what is wrong with me but it is so obvious something is just by looking at me that I am in great discomfort. I usually sleep most of the rest of the day after we get home trying to recover, it is like recovering from a seizure. Thank you SurgiMenopause for all of your support
875426 tn?1325532016
There was something right with you actually, that you would care enough to tell your husband to go to the dr. with what sounds like something dangerous to his health.  You did to him what you longed for him to do to you- in sickness, like your mom said.

While it's good you have EMG scheduled, The thirteenth is too long to wait to see a dr. in your condition with your eyes and all your other horrible physical symptoms, if you ask me.

Can you see your primary care doctor, tell about your horrible symptoms and ask him to expedite things with the proper specialist?  There's a difference between routine referrals and urgent & I hope it becomes impressed upon your dr. your situation is the latter!  

Has your mom had an appt. yet where you told a dr. about her stroke-like symptoms episode?
Avatar universal
hello Surgi,
  I agree the thirteenth is along time away, I do have a apointment with my GP on monday, my lung on the side I had the rib removed is acting up again I really do not think that it is supposed to be making squelching noises. I have been on Doxycycline for bronchitis but it has gotten steadily worse sense I was at the Dr a week and half ago. The mass on the rib was benign but recently the pain in the area has returned and the cough.I will tell my GP about my symptoms, he used to not take me too seriously but he was the one that came up with the Autonomic Dysfunction diagnosis he simply didnt have the nec. tools to diagnos me so I went to my neuro with it. I do not know if my GP knows my new neuro or not he does a lot of ER work in the same town as my neuro. I do not know when my GP finds time to sleep the man is into everything.
  I took my mom to the neuro that we have both seen for years. She took a cognitive test and did better than I did. i could not remember those darn three words. She also did well on balance and relflexes, My balance right now *****. Basically my 86 year old mom seems to be in better shape at the moment than I am. holy cow that is ridiculous. I told him about what had happened to her and he told her that he was glad she was going to be living with me from now on. She was obviously doing okay at that time so what ever had happened was well past at that point. He knows I will watch her closely and care for her properly now. She did not sleep well last night and today was horrible for her memory we spent all day going over the same thing time after time. Very jumbled. Amazing waht a nites sleep can do or undo.  Thank you Surgi.
875426 tn?1325532016
Please let me know how it goes tomorrow at your appointment?  I hope they x-ray your lungs!  I'm glad your mom seemed to be doing okay, but still think the doctor should have perhaps ordered an MRA/MRV to see if there was any infarct there in your mom's blood vessels and also, if he felt it may have been a TIA to put her on some medicine to try to prevent a full blown stroke.  Sounds like you two need each other right now!  
Avatar universal
  Mom is on coumidin (sp?) She was coming home from having a protime when she had what was either a small seizure or a TIA. Interestingly enough her levels were spot on when they called about the protime. Crazy huh? I will post after my Dr visit tomorrow. Thank you SurgiMenopause.
875426 tn?1325532016
Does she have a heart condition (re: coumadin)?  My grandma was on that.  I hope she didn't have a brain bleed or something?  Anyway, glad she's doing somewhat better it sounds like?  Please do give me an update about your visit!
Avatar universal
  She had a stroke years ago, she has a hole behind her heart but they will not do the surgery to close it due to her age. She is disgusted with them for that, so she has to be on the coumadin for life.
   I went to the doctor and he sent me for a chest xray. Had not had one for several months. He also put me on Meloxican.  I reminded him I was on steroids and methotrexate and plavix and he said he knew he had reviewed my meds before deciding on it. I do not believe he plans to keep me on it long range. Let me state I do not plan to stay on it long range.
  I told him about the muscles in my facce and my eyes and he said it was some type of migrane. I wish I could remember what he had said. He said many people got auras with them but felt no pain. Which triggered a memory for me. Last night I was working at the computor and suddenly smelled ciagarette smoke, my trigger or aura before a seizure, there could be no cigarette smoke anywhere near me so I knew something was up and pretty soon my face began to twitch. lasted for hours.my vision even flickered like in candlelight. He said I discribed one exactly. Wish I could remember what they were called. Although they are uncomfortable, and they feel as though they even effect my breathing somewhat at least they are not the kind that give debilitating pain like my daughter in law gets. so now we sort of know what is going on, I will wait to hear or not hear on the xray. will post when I know. Dr also said to stop carrying boxes, I am still healing and that cant be helping things. Im sure he is right.Thank you Surgi.
875426 tn?1325532016
Maybe you could call and ask the nurse to call you back and tell you what the doctor wrote in his chart for a diagnosis (what those episodes are called)?  You could mention you hadn't written it down and want to do that for your records.  Yeah, I imagine weight-bearing would aggravate a still healing surgery site there!  Hope you can maybe get a little cart for your boxes and someone to help you with them?
1649405 tn?1366260626
I have experienced the vibrating eyeballs.  I have tried to explain it to others and the best I can do is to say that it doesn't hurt it is just extremely annoying. I assumed it is muscle spasms since I have the same sensation in other areas of my body and my doctor told me it is probably muscle spasms or my nerves.  But I definitley couldn't tell you for sure. I have actually been struggling with my symptoms since I was about 20 and now I am 33 and was just diagnosed about 1 and 1/2 years ago. I still feel half confused by everything.  That is why I signed up for this forum.
Avatar universal
   Hello, thanks for writing. If I may ask, what is your diagnosis, I am assuming autonomic dysfunction of some type since you are on this forum, but it seems to me after reading some of the posts there are many different kinds of it. Or do I misunderstand and you were diagnosed with migraine? It is good to hear from someone else that has actually had it happen, you feel like a nut trying to explain it to anyone.
875426 tn?1325532016
Heeler- looks like she has P.O.T.S. from her profile, as do I.  But I don't have the vibrating eyeballs and from my understanding, that is not part of P.O.T.S..

Invisiblyme- did the dr. diagnose you with nystagmus?  You say you get spasms in other parts of your body as well.  Have they ever ruled out Jacksonian seizures?
1649405 tn?1366260626
I have been diagnosed and mis-diagnosed for years! After my last most severe episode that started about 1 1/2 years ago I was finally diagnosed with POTS.  As far as my eyes the only thing that I have been told was that I have something wrong with periphial tracking in my eyes and so far my doctors have contributed it to the POTS. I don't really know if it is just easy for them to do that because they don't have a better answer.  
875426 tn?1325532016
Maybe your guess of not having a better answer is right.  After all, POTS stands for postural orthostatic tachycardia syndrome!  So they ran an ENG and VNG tests on you?
Avatar universal
Did you ever find out the cause of the eye muscle spasms? Is it a nystagmus? Are they part of dysautonomia? I think it may be connected to a connective tissue disorder too, which is often the cause of dysautonomia and POTS. I am being checked now for Ehler's Danlos Syndrome and a couple other possibilities. EDS is the most suspicious. Since these are considered to be rare, most doctors are not up on them. I think they are not as rare as they say they are.
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