Re: Involuntary singing/humming
Hi Nilda,
I hum and sing almost constantly. I view it as an attempt to keep or get my eyes to open. I do not think that mine is an OCD thing. My reasoning behind that is that when I went to Utah to have my surgery, I hummed and made noises until they put me to asleep for the surgery. The entire time that my eyes were bandaged, I didn't make any noises. I did no head turning or facial grimacing or jaw thrusting, either. Surgery was on a Tuesday morning. Bandages were removed on that Friday morning. I didn't even notice that I wasn't humming until about Thursday when I mentioned it to my husband. As soon as I got my bandages off and was leaving the building to go back to the motel, I was having difficulty getting my eyes to open and I immediately started humming. I remember when I first noticed that very soft humming would keep my eyes open. I was delighted. Now, it seems that if I don't hum or make noises, my eyes won't open. I think of it more as an acquired sensory trick that doesn't always work, but if I don't hum, my eyes won't open. Habit? It does seem to be involuntary most of the time, now.
If it was a habit or OCD thing, I think that I would have continued doing these things, even with my eyes bandaged. I wasn't trying to see, therefore I didn't do the other things. The more problems that I have with my eyes, the more problems that I have with all the other things. When my eyes are doing better, the other things improve.
I'm humming right now. "Do you hear what I hear?"Shirley in AR. humming away
Re: Involuntary singing/humming
Hi Nilda--I am humming constantly. I was not aware of the constancy
of it til my folks came to visit and Mom gave me some insights as to
just how this disorder is affecting me. Since I have a breathing
difficulty as well, I think the humming not only helps my eyes but
somehow compensates for my breathing spasms as well. It is involuntary
now. If I am not humming, I make involuntary noises which can get kind
of embarrassing. I do sing quite a bit as well but is a bit more
laborious for me due to the breathing irregularity. I am still working
so fortunately for me my desk is not real close to my coworker or I
suspect this humming and the noises could drive someone nuts.
Anyway, rest assured you are not alone!! Joanne M. CA
Re: Involuntary singing/humming
Nilda, you are certainly not alone in the constant humming business. If only we could all carry tunes beautifully and go on a well-paying tour! I used to be able to sing quite well, but now just have a hoarse, raspy, off-key voice that keeps going all the time.My mother, who was "cured" of BEB, hums tunelessly quite constantly, especially when keyed up, and it used to drive me absolutely nuts!! Now I am doing the same thing. Don't they say that we eventually become our mothers?? What I don't understand is: why does she continue to hum even though she no longer has BEB to contend with? With her, I think it is more OCD. I've had people glance at me in stores and then realized that I was either humming or talking to myself. Maybe I could carry along a walkie-talkie or cell phone just to give the appearance of talking to someone else! Are you able to rest on your laurels now from the cookbook project? Sally in North Idaho
Re: "cured" - Sally
Hi Sally,
Could you please remind me of how your mother got cured and how long it took? And Especially how did she know she was cured and it was not in remission?
thanks and hugs,
Mindy in NY
Re: "cured" - Sally
Hi Mindy,My mother finally had a diagnosis of BEB after the usual long search in the late 1960s. She had many types of treatment from changes of glasses to anemia to whistle blowing in her ear to shock treatments, the whole works. A psychiatrist came up with the diagnosis and she was referred to the University of Iowa Hospital for surgery which severed the seventh cranial nerves. They regenerated and she had three or four more surgeries, the last of which left one side of her face numb and drooping somewhat (like a stoke victim), and one eye tears constantly. But she can keep her eyes open wide with no spasms and no photosensitivity. I contacted Dr. Daroff from this web site and others who were making studies. All told me that the particular surgery my mother had is no longer done anyplace and was thrown out because it was not successful and had too many side effects. She probably asks me at least once a week why I don't go have the surgery she had. She even asked my neurologist why he wasn't sending me for that. She thinks it was a miracle cure. I don't know. Maybe she was just one of the fortunate ones. Sally in North Idaho
Re: "cured" - Sally
Hi Sally,
I can see how it can be frustrating for your mother to hear
they can't do the surgery for you.
Your mother was very lucky to get a psychiatrist to make the correct diagnosis 40yrs. ago. What a sin to know we have all gone the long route of doctors who don't have a clue in the year 2001.
Mindy in NY
Re:tourettes
Yes I saw that show and that is why I used it as ex. I thought it was fascinating and brought to mind how unusual the symptoms to brain disorders can be.
Re: Re:tourettes
I just read Nilda's post where she said her eyes will
stay open as long as she dances.
I think it's safe to say we have all found something
that we can do that will keep our eyes open ie. crotcheting,gardening,painting, etc.
I found it very interesting that the people with Tourettes can be tic-free while doing some type of task. On the show they mentioned doing anything artistic helps them. One young girl was able to be on stage
acting and singing without tics.
So, there's some kind of connection here, what do you think?
Mindy in NY - where the rain has finally stopped - BBQ time :-)
Re: Re:tourettes
Isn't it Mel Tillis who can sing beautifully and free of any stammering, but stutters terribly when talking? He is the first one to come to my attention with this sort of disorder. At first, many people thought it was just a gambit on his part to attract attention, but finally they were convinced that he actually had a disorder.Sally in North Idaho
Re: Involuntary singing/humming
I also do a lot of humming, but I just thought it was because I was getting older and it is a family thing. I usually have a song going on in my head. My Grandma hummed all the time and my Aunt Evia who looks more like my grandma every day hums all the time. My son sent me a video of a Bed and Breakfast they are trying to buy and I noticed when he wasn't talking about what he was taping....he was humming softly. He is 31 and the spitting image of me and has always been very light sensitive. Hum, wonder what that means? I'd never thought about it much, but maybe it does help keep my eyes open. I also "sigh" a lot.
Re: Involuntary singing/humming
I'm glad to know that I'm not alone. I wonder how this relates to our BEB? I asked a neurologist and she saw no connection. Anyway, I'm fortunate in that people compliment me and comment on how nice it is to see a happy person. I find it tiring and don't enjoy it all that much becuase it's one more thing I can't control. Thanks for all your comments.
I've just spent the past three days going over the proofs for the cookbook. (Thank God my eyes have held up.) It should be ready in July.
Re:cookbook
Thank you so much for all the hard work you have done on the cook book. Glad your eyes did ok. And once again I don't think any doctor knows all there is to know about BEB and all the little things that go along with it. For example with Tourettes(spelling?) syndrome there are many characteristics that have just come to light. If there is hummining you feel you can't control...there could be some brain syndrome causing it. Sorry it tires you out, but better than than uncontrollable outbursts of cussing and echoing...right?
Re: Re:Tourettes
On Oprah the other day her show was about Tourettes.
I found it very interesting. Like us they don't all have the exact same symptoms. They have the frustration of a body that tugs at them from the inside, that the outsiders don't see, and can't understand how exhausting it is. The show came about as a result of her book club book "Icy Sparks." The focus of the book is not on Tourettes, rather the feelings that go on inside of a person learning to cope who is so-called "different".
Mindy
Re: Involuntary singing/humming
You're not alone in finding it tiring. It is very annoying to me. My immediate family knows why I do it and they don't mention it but when my sister, who is a teacher, from out of state visiting recently, you told me that if I were one of her students that she would have told me to shut up or get out of class. I do so love my sister and parents. They can be the cruelest of all.
I had a nurse tell me that I was over there clucking like a chicken, on a recent visit to the ER with my mom in the middle of the night. That didn't bother me as I just handed her a card and proceeded to "teach" her about BEB. I can deal with the strangers, it is the family members that I have trouble with.Thanks for doing all the hard work on the cookbook. I can't wait to see it. Your fundraising work is very much appreciated. Shirley in AR.
Re: Involuntary singing/humming
I am eagerly looking forward to the cookbook. I love to peruse them and dream, even though I'm not much of a cook. One of our Homemaker's Club ladies told me this week that she had received a call from you re: her use of 3/3 tsp. She was laughing at herself for her error in 3/4.This was a huge undertaking for you and I, for one, thank you!! The constant humming wears me out, too, and I resent the fact that I can't shut it up. But as someone posted here, it's better than bursting out with swear words. Sally in North Idaho
Re: Involuntary singing/humming
I'm glad to know that I'm not alone. I wonder how this relates to our BEB? I asked a neurologist and she saw no connection. Anyway, I'm fortunate in that people compliment me and comment on how nice it is to see a happy person. I find it tiring and don't enjoy it all that much becuase it's one more thing I can't control. Thanks for all your comments.
I've just spent the past three days going over the proofs for the cookbook. (Thank God my eyes have held up.) It should be ready in July.
Re: Involuntary singing/humming
I was elated to hear that you "always have a song going on" in your head!!!!! I do, too!!! Sometimes, another one will butt in and try to over-ride the first. I once asked my doctor (PCP) what song was playing in his head at the moment. Total blank stare. Then I asked if some poeple do not have songs in their heads. I'm sure he thought I was nuts. But I tease him sometimes. I do know that others in my family don't have music in their heads, so maybe the men with straight jackets will be after me soon.As for your son's light sensitivity, that could be hereditary, once all the ins and outs of this affliction are sorted out. My 39-year-old son recently told me that he had a constant tic in one eye for several weeks. I asked my neuro about it, and was told that this can definitely be an early warning of BEB. Pleasant thought! He followed that with the well-known information that nothing can be done until spasms actually begin, and then there is Botox. Sally in North Idaho
Re: Involuntary singing/humming
The last few days I've had the song "It is well with my soul" over and over in my head. I actually tell myself to SHUT UP - LOL - that is not one of my favorite songs.
I used to make those constant little grunt type sound that was very embarassing. I would do it for weeks, and then it would stop. I never knew why it would happen, but I couldn't stop it if I tried.
Sally, I hope your neurologist is wrong about your son. My son is 23 and was having a tic in one eye for a week, he was very upset about it.
I can't tell you how upset and scared I felt. I am petrafied(sp)if he would get this, neither one of us could handle it, that's the truth.
Mindy in NY
Re: Involuntary singing/humming
Mindy, I guess we have no choice but to take one day at a time and deal with what life hands out. I did tell my son what the neurologist told me, as I thought he should be aware ... particularly since he had asked me if that was how mine began. I would just be crushed if one of my sons had to deal with this. Let's just hope that research will come up with something positive soon.
Re: Involuntary singing/humming
I do sing some in the car to open my eyes but my grandmother who also has beb hums all the time and has since I can remember. I remember as a teenager we would be visiting and trying to watch tv and she would be humming continuously. Since my diagnosis we have talked about it and she told me that she hums and can't help it. She takes phenabarbitol (spelling) and it helps with the humming.
Re: Involuntary singing/humming
I'm just amazed that no one had every mentioned this humming before. Again, it emphasizes the fact that sharing our various "peculiarities" really is useful. It doesn't make it go away but it is comforting to know you have companions on the journey who understand. Another thing that boggles my mind is the songs I hum. Why those? Most of them are old songs from my teens. I know how annoying it is to hum a song that you can't stand.A doctor told me to sing "Who Let the Dogs Out?" thinking it would be obnoxious enough to discourgae me from singing but I hate "Mona Lisa" and that's on my top ten tunes. The other things is that like a cricket who rubs his legs faster the warmer the weather gets, I sings more the more stress I'm facing. Thanks for your support folks.
Nilda
Re: Involuntary singing/humming
Nilda, I can't believe it!! I usually hum songs from my teen years also (MANY moons ago) and "Mona Lisa" (a NON-favorite!) is one of my most frequent tunes up on the humming machine! Now I'll have that darn thing in my head the rest of the day. Thanks a lot!
Re: What happens when you stop?
Hi Nilda,
I don't know where you mean that it hasn't been mentioned before as I have mentioned it myself several times on the bb and know that others have as well. I think that it was mentioned at the conference even last year and someone had suggested that it might be a form of dystonia itself. (Or that might have been my MDS) I don't quite go along with that. I personally feel that it is an acquired sensory trick that we do to help our eyes out. If you stop, do your eyes close? Mine do. Try stopping, the humming or singing or whatever and notice what your eyes do?
Let me know the results you get. My eyes invariably close and are difficult to open when I stop my noise making.Shirley in AR.
Re: What happens when you stop?
Ditto on all: Discussed MANY times, eyes close when you force yourself to stop, have to make all sorts of noises and grimaces to open them again. Not sure if "noises" are acquired tricks or involuntary. Either way ... annoying!Sally in Idaho
Re: What happens when you stop?
I guess my eyes weren't the only things that were shut. I've always heard about people who hum intentionally as a sensory trick, but not unintentionally. My eyes don't shut when I stop but I odn't stop for very long. By the way, getting on the dance floor keeps my eyes open for as long as I'm out there.
Nilda
Re: What happens when you stop?
I recall a sort of discussion on this also, like the oral sense kicks in another sense. my eyes also open when i am talking, but talking or singing all the time is exhausting. i frequently have songs in my head, sometimes hum to them but i think it's because i have listened to probably more than my share of music so far in my life. It also helps with pain and the frustration when your eyes are bad.
Re: What happens when you stop?
I had music in my head loooonnnnnng before BEB. I'm wondering if that is another one of the loose kinks common to our brains that go along with this disorder known as BEB. Most "normal" people whom I have queried do NOT have music in their heads.Sally in North Idaho
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